Sarah Wells

@sarah-wells | contributor
Sarah is a certified life coach and NLP Master practitioner, blogger and a qualified teacher. She supports women who and tired, depleted and in pain who are ready to make their health and happiness a priority once and for all in her signature programme 'Chronically Empowered' When Sarah was diagnosed she felt like she was the only one going through it and that no one understood what her life was like. Tired, in constant pain, she doubted that she would ever be able to get he life back on track. Let alone be happy. But she did get back on track. She started to feel like her again and began to add in the things that she loved to do to her days, to meet friends for a coffee, to take the kids to the park and to work again. She began to communicate effectively with the people around her and I stopped letting her chronic pain and tiredness control her life. You can have this too! On her journey she found that there were four key things that changed the game for her and helped to get her to where she is today. Surprisingly, they were not things that she found chasing doctor’s appointments, ordering more supplements and reaching for medication. She understands that the struggle is real, you just want to live, for it to be like it was, so you often do too much and then pay for it later in terms of pain and fatigue. Then, slowly your symptoms stop you doing the things that you love so that you just have the time and energy for the things you have to do. When you stop to look at your life you wonder where YOU have gone in all of this and it you think about where you will be in 10 years time it scares you. Sarah has built the four key pillars of acceptance, purpose, communication and management into a comprehensive 4 month programme that will fully support any medical plan that you are following. So that you can get back in control of your health and happiness. With YOU and YOUR mindset at the heart of everything that you do. Together you will create a customised game plan that will get you back on track. Get ready to love your life again and regain control of your health and happiness even with chronic illness in your life. Book a Call - https://calendly.com/sarahwells-lifecoach/discovery Follow her on Facebook and Instagram @sarahwellscoach
Sarah Wells

8 Ways Imposter Syndrome Shows Up in Chronic Illness

Have you ever felt like you don’t belong? Like any second now, your friends or workmates will discover that you are a fraud? Do you ever think your successes are attributed to luck, rather than your own skills or qualifications? Or, do you try to keep more and more balls juggling in the air, always trying to maintain impossibly high standards, and with each success you achieve, the greater the feeling that you aren’t enough? If so, you’ve probably experienced imposter syndrome, right along with an estimated 70% of the population. Imposter syndrome was first described back in the late 1970s by psychologists Pauline Rose Clance and Suzanne Imes who recognized that this imposter phenomenon was particularly prevalent amongst a select group of high-achieving women. But, it is known to affect all kinds of people from all walks of life, men, women, medical students and managers. Even international superstars are not immune to its effects. Emma Watson, star of the Harry Potter movies, told Rookie magazine, “It’s almost like the better I do, the more my feeling of inadequacy actually increases, because I’m just going, ‘Any moment, someone’s going to find out I’m a total fraud, and that I don’t deserve any of what I’ve achieved.” More and more, imposter syndrome is being seen in marginalized groups and shows up regularly in the disabled and chronic illness communities. It makes perfect sense that your feelings of self-doubt and being a fraud are more likely to show up if you have grown up belonging to a group that was historically believed to be less capable. According to the Department of Health, 15 million people in England have one or more long-term health conditions, and the number of people with multiple chronic illnesses is rising. These are conditions that cannot be cured in most cases, but which can have a major impact on people’s everyday lives. Aside from the physical symptoms, people with long-term conditions are two to three times more likely to experience mental health problems than the general population, and with 15% of all long-term conditions seen in young adults aged 11-15, this group is too important to ignore. With the pressures in society increasing, imposter syndrome is likely to be seen more and more. How does imposter syndrome show up when you have a chronic illness or disability? The more I delve into this topic, the more I can recognize my imposter showing up for me during the different stages of my chronic illness journey. As a young adult before my diagnosis, after diagnosis (while simultaneously trying to juggle work and hide from everyone the struggles with my health), when I was a new mum (and my health crashed to an all-time low), and even now, when I feel like I am not well enough to be “normal” but don’t look disabled enough to fit into that space either. Dr. Valerie Young has categorized imposter syndrome into five subgroups in her book, “The Secret Thoughts of Successful Women: Why Capable People Suffer From the Imposter Syndrome and How to Thrive in Spite of It.” These categories are the Perfectionist, the Superhero, the Expert, the Soloist, and the Natural Genius. I can recognize elements of myself in most of these Imposter archetypes, particularly the perfectionist, the expert and the superhero. Feeling like a fraud in your own body I was diagnosed in my 20s with Charcot Marie Tooth disease (CMT) and in my 30s with Ehlers-Danlos syndrome (hEDS), despite living with the symptoms since being a small child, at points hospitalized and unable to walk. I encountered decades of normal blood test results and doctors telling me that there was nothing wrong, when in fact the doctors were never looking in the right place. Now we know that imposter syndrome makes you feel like a phony. Imagine being told all your life that your symptoms are in your head, that the pain that you are experiencing has no cause, so much so that you begin to doubt that it is real yourself. Then when, often as an adult, you finally get a diagnosis you still doubt yourself. The decades of feeling like a fraud in your own body are hard to shift. When you feel pain, even after the validation of a diagnosis, you question if it is as bad as you are imagining. This feeling of being an imposter can be as debilitating as the pain itself. Imposter syndrome and refusing your own success These feelings spilled over into my studies at university. I came from a very working-class background and was the first person in my family to go to Uni. My symptoms continued throughout my teens and my time studying and I began to just push them aside more and more. If no one could find a reason then I must be imagining it, right? Dislocations would happen more often than brushing my teeth and I could relocate my patella as easily as zipping up my trousers. I worked hard and my grades steadily got better and better and I left university with a first degree. But, I didn’t believe that I deserved it, nor had I earned it and I put it all down to a fluke. When applying for jobs, I would often downplay my expertise even though I was genuinely more skilled than the other candidates. Thankfully, they saw me for who I was, sat in front of them with the skills I possessed and viewed my modesty as an admirable quality rather than the imposter around my neck holding me hostage. Is your imposter making you doubt your symptoms or disability? Occasionally I have to use a wheelchair to get about when I can’t weight bear, such as if my labral tear or hip impingement is flaring or if I have had a dislocation. There have been points over the last few years where our son would not have been able to leave the house without one. And, our daughter uses a wheelchair regularly when out and about to manage pain and fatigue. We can walk, mostly we look well (although that is not always the case with my son, but you generally won’t see him on those days), and we are happy. Which begs the question: where do we fit? Using a wheelchair part-time can make you feel like a fraud and question your reasons for using it at all. Should I just manage without, even if it leaves me unable to walk for the next few days? That nagging doubt begins to creep back in. Imposter syndrome fueled by medical gaslighting With my diagnoses, I entered two worlds: One where I had a genetic test to confirm it (CMT) and one where I didn’t (hEDS). And what I have noted time and time again is that the imposter phenomenon is far more present in the latter due to the continuing doubt from the medical community that hEDS exists at all. Similar practices are echoed in the ME (myalgic encephalomyelitis) community, another condition that at present has no conclusive test to diagnose. Medical practitioners gaslight patients by blaming their illness or symptoms on psychological factors, or by denying a patient’s illness entirely, for example by wrongly telling patients that they are not sick. After enduring decades of “normal” test results, I was adamant that I did not need nor want any support with my psychological wellbeing. I was not going to let anyone tell me that these conditions were in my head. This narrative caused by medical gaslighting is damaging, many people with long-term conditions would benefit from support to process their emotions and thoughts surrounding the impact their health condition has on their lives and move forward positively, but like me will refuse it. Being a perfectionist and self-sabotage Being a perfectionist is the imposter avatar I relate to the most. This probably has something to do with my personality type, but also relates to my experiences with disability and chronic illness. As a young teacher quickly progressing through the ranks in school, I placed impossibly high standards on myself to match up to my peers. I worked longer and longer hours, weekends, and volunteered for things that I did not really want to do, all in a bid to prove to others (and myself) that I matched up. That my disability did not need to get in the way and that I did not need special treatment. The truth was that my colleagues probably never thought about my health because I hid it so well and what I projected was so “normal” and capable. I set an impossibly high bar for myself to achieve and made myself sicker in the process. If I had been honest with myself, I may have stayed in the profession. Either way, I would have had a choice. My fear of failure and insecurities had a hand in sabotaging my own success. Believing asking for help is a sign of weakness As a new mother, my body actually started to fall apart. Surgery after surgery came and when I wasn’t recovering from a procedure, I just felt generally awful. On top of that, I felt guilty that I wasn’t the mum to my young son I had visualized in my head. In a bid to prove to the world that I could cope, I tried to do everything on my own, firmly believing that asking for help would be a sign of weakness. I felt ashamed that I couldn’t do everything (although people rarely saw because I didn’t let them). I was always striving to be better, not less than. Looking back with fresh eyes, I can see that this time of my life was actually quite precious. I was present with all of my children every day. Had my body not been falling apart, I would have undoubtedly been trying to conquer the world and having it all. The bond I now have with each of my three children is unbreakable and it is due to the fact that we have always spent so much time together. Ableism fueling imposter syndrome Ableism, the discrimination against disabled people is strong throughout the educational system in the U.K., particularly when you have a disability or medical need but are academically bright. You are entitled to educational accommodations to help with your studies or tests, to level the playing field so to speak, if you get brain fog and need regular rest breaks, or get hand pain when writing and need to use technology or a scribe. Many people with a disability or illness are made to fight for any real support, leaving them with feelings of doubt and questioning if they really deserve the accommodations in the first place. To get the right support in place for my teen, who was too sick to attend school at all took 20 months rather than the 20 weeks suggested by the U.K. government and we ended up in court. Twenty months and a court case to secure at-home online education that is now so commonplace. It’s ridiculous. Many give up as the system is stacked against them. I see the feelings of uncertainty in this population time and time again. It stems from this deep-rooted ableism, a lack of money and navigating a system that seems weighted against them. Comparison feeding the feeling of not matching up As someone with a (mostly invisible) disability, I am guilty of comparing myself to others. From my best friend who looked a stone lighter on a night out when she popped on her 6″ stilettos, while I donned sensible flats. To the mums in the playground with their perfect car and child and hair that seemed to have it all. Comparison was fueling the feelings of not being good enough that stemmed from my body letting me down. What I have come to realize is that no one actually has it all, least of all the mum who hid behind her perfect life to hide her own crushing insecurities and debt. Facing my imposter feelings As I have aged and am now well into my 40s, I can look back on my life with reflective eyes, both on the progression of my chronic illnesses, my work, my growing family and my feelings of being an imposter. My feelings of being a fraud have pushed me out of my comfort zone at many times during my life, like when my tutor said I wasn’t bright enough to be in his A level biology class (note the first degree), or when I spoke to a room full of pediatric consultants about my children’s conditions and each year when I guest lecture at Brunel University. To give credit where it is due, at points in my life my imposter has truly been the driving force behind my successes. I am still a perfectionist, but I can recognize when that is not serving me and know that done is better than perfect. I know I can play to my strengths because I have many of them and am happy to ditch or delegate the other things to other people. I know asking for help is a sign of strength, not weakness, and by working together with others I can achieve so much more. Will we still have to face gaslighting from the medical profession? Probably. It saddens me to think that this still goes on. I stand strong in appointments with professionals and where our opinion differs, for example where a consultant told us he didn’t actually believe our son’s condition existed at all, (clinically diagnosed by an esteemed colleague). I thank them for their comments and move on… quickly. Do I care that my daughter uses her wheelchair to ride to the park so she has enough energy to play while she is there and still be awake at teatime? Of course not! Do we get funny looks when she gets out of her wheelchair and her older brother shouts, “It’s a miracle!” for all to hear? Most definitely, but we laugh and carry on with our day. What I am noticing is that I am raising children with their own health issues who are confident and proud of who they are and of all their abilities and achievements. Disabilities or not, they have a strong and positive self-concept and I am proud of each of them as they grow. What has changed over the years is not my disability or illness or the world in which I live, but my own thought processes surrounding everything to do with my life and my health. My mindset, my own attitude towards myself and my illness has grown, and what has followed is a freedom I could have only dreamed of in my early 30s. Do I wish I could wear high heels? Sometimes. But if that meant giving up who I have become, I will keep this version, thanks.

Sarah Wells

8 Ways Imposter Syndrome Shows Up in Chronic Illness

Have you ever felt like you don’t belong? Like any second now, your friends or workmates will discover that you are a fraud? Do you ever think your successes are attributed to luck, rather than your own skills or qualifications? Or, do you try to keep more and more balls juggling in the air, always trying to maintain impossibly high standards, and with each success you achieve, the greater the feeling that you aren’t enough? If so, you’ve probably experienced imposter syndrome, right along with an estimated 70% of the population. Imposter syndrome was first described back in the late 1970s by psychologists Pauline Rose Clance and Suzanne Imes who recognized that this imposter phenomenon was particularly prevalent amongst a select group of high-achieving women. But, it is known to affect all kinds of people from all walks of life, men, women, medical students and managers. Even international superstars are not immune to its effects. Emma Watson, star of the Harry Potter movies, told Rookie magazine, “It’s almost like the better I do, the more my feeling of inadequacy actually increases, because I’m just going, ‘Any moment, someone’s going to find out I’m a total fraud, and that I don’t deserve any of what I’ve achieved.” More and more, imposter syndrome is being seen in marginalized groups and shows up regularly in the disabled and chronic illness communities. It makes perfect sense that your feelings of self-doubt and being a fraud are more likely to show up if you have grown up belonging to a group that was historically believed to be less capable. According to the Department of Health, 15 million people in England have one or more long-term health conditions, and the number of people with multiple chronic illnesses is rising. These are conditions that cannot be cured in most cases, but which can have a major impact on people’s everyday lives. Aside from the physical symptoms, people with long-term conditions are two to three times more likely to experience mental health problems than the general population, and with 15% of all long-term conditions seen in young adults aged 11-15, this group is too important to ignore. With the pressures in society increasing, imposter syndrome is likely to be seen more and more. How does imposter syndrome show up when you have a chronic illness or disability? The more I delve into this topic, the more I can recognize my imposter showing up for me during the different stages of my chronic illness journey. As a young adult before my diagnosis, after diagnosis (while simultaneously trying to juggle work and hide from everyone the struggles with my health), when I was a new mum (and my health crashed to an all-time low), and even now, when I feel like I am not well enough to be “normal” but don’t look disabled enough to fit into that space either. Dr. Valerie Young has categorized imposter syndrome into five subgroups in her book, “The Secret Thoughts of Successful Women: Why Capable People Suffer From the Imposter Syndrome and How to Thrive in Spite of It.” These categories are the Perfectionist, the Superhero, the Expert, the Soloist, and the Natural Genius. I can recognize elements of myself in most of these Imposter archetypes, particularly the perfectionist, the expert and the superhero. Feeling like a fraud in your own body I was diagnosed in my 20s with Charcot Marie Tooth disease (CMT) and in my 30s with Ehlers-Danlos syndrome (hEDS), despite living with the symptoms since being a small child, at points hospitalized and unable to walk. I encountered decades of normal blood test results and doctors telling me that there was nothing wrong, when in fact the doctors were never looking in the right place. Now we know that imposter syndrome makes you feel like a phony. Imagine being told all your life that your symptoms are in your head, that the pain that you are experiencing has no cause, so much so that you begin to doubt that it is real yourself. Then when, often as an adult, you finally get a diagnosis you still doubt yourself. The decades of feeling like a fraud in your own body are hard to shift. When you feel pain, even after the validation of a diagnosis, you question if it is as bad as you are imagining. This feeling of being an imposter can be as debilitating as the pain itself. Imposter syndrome and refusing your own success These feelings spilled over into my studies at university. I came from a very working-class background and was the first person in my family to go to Uni. My symptoms continued throughout my teens and my time studying and I began to just push them aside more and more. If no one could find a reason then I must be imagining it, right? Dislocations would happen more often than brushing my teeth and I could relocate my patella as easily as zipping up my trousers. I worked hard and my grades steadily got better and better and I left university with a first degree. But, I didn’t believe that I deserved it, nor had I earned it and I put it all down to a fluke. When applying for jobs, I would often downplay my expertise even though I was genuinely more skilled than the other candidates. Thankfully, they saw me for who I was, sat in front of them with the skills I possessed and viewed my modesty as an admirable quality rather than the imposter around my neck holding me hostage. Is your imposter making you doubt your symptoms or disability? Occasionally I have to use a wheelchair to get about when I can’t weight bear, such as if my labral tear or hip impingement is flaring or if I have had a dislocation. There have been points over the last few years where our son would not have been able to leave the house without one. And, our daughter uses a wheelchair regularly when out and about to manage pain and fatigue. We can walk, mostly we look well (although that is not always the case with my son, but you generally won’t see him on those days), and we are happy. Which begs the question: where do we fit? Using a wheelchair part-time can make you feel like a fraud and question your reasons for using it at all. Should I just manage without, even if it leaves me unable to walk for the next few days? That nagging doubt begins to creep back in. Imposter syndrome fueled by medical gaslighting With my diagnoses, I entered two worlds: One where I had a genetic test to confirm it (CMT) and one where I didn’t (hEDS). And what I have noted time and time again is that the imposter phenomenon is far more present in the latter due to the continuing doubt from the medical community that hEDS exists at all. Similar practices are echoed in the ME (myalgic encephalomyelitis) community, another condition that at present has no conclusive test to diagnose. Medical practitioners gaslight patients by blaming their illness or symptoms on psychological factors, or by denying a patient’s illness entirely, for example by wrongly telling patients that they are not sick. After enduring decades of “normal” test results, I was adamant that I did not need nor want any support with my psychological wellbeing. I was not going to let anyone tell me that these conditions were in my head. This narrative caused by medical gaslighting is damaging, many people with long-term conditions would benefit from support to process their emotions and thoughts surrounding the impact their health condition has on their lives and move forward positively, but like me will refuse it. Being a perfectionist and self-sabotage Being a perfectionist is the imposter avatar I relate to the most. This probably has something to do with my personality type, but also relates to my experiences with disability and chronic illness. As a young teacher quickly progressing through the ranks in school, I placed impossibly high standards on myself to match up to my peers. I worked longer and longer hours, weekends, and volunteered for things that I did not really want to do, all in a bid to prove to others (and myself) that I matched up. That my disability did not need to get in the way and that I did not need special treatment. The truth was that my colleagues probably never thought about my health because I hid it so well and what I projected was so “normal” and capable. I set an impossibly high bar for myself to achieve and made myself sicker in the process. If I had been honest with myself, I may have stayed in the profession. Either way, I would have had a choice. My fear of failure and insecurities had a hand in sabotaging my own success. Believing asking for help is a sign of weakness As a new mother, my body actually started to fall apart. Surgery after surgery came and when I wasn’t recovering from a procedure, I just felt generally awful. On top of that, I felt guilty that I wasn’t the mum to my young son I had visualized in my head. In a bid to prove to the world that I could cope, I tried to do everything on my own, firmly believing that asking for help would be a sign of weakness. I felt ashamed that I couldn’t do everything (although people rarely saw because I didn’t let them). I was always striving to be better, not less than. Looking back with fresh eyes, I can see that this time of my life was actually quite precious. I was present with all of my children every day. Had my body not been falling apart, I would have undoubtedly been trying to conquer the world and having it all. The bond I now have with each of my three children is unbreakable and it is due to the fact that we have always spent so much time together. Ableism fueling imposter syndrome Ableism, the discrimination against disabled people is strong throughout the educational system in the U.K., particularly when you have a disability or medical need but are academically bright. You are entitled to educational accommodations to help with your studies or tests, to level the playing field so to speak, if you get brain fog and need regular rest breaks, or get hand pain when writing and need to use technology or a scribe. Many people with a disability or illness are made to fight for any real support, leaving them with feelings of doubt and questioning if they really deserve the accommodations in the first place. To get the right support in place for my teen, who was too sick to attend school at all took 20 months rather than the 20 weeks suggested by the U.K. government and we ended up in court. Twenty months and a court case to secure at-home online education that is now so commonplace. It’s ridiculous. Many give up as the system is stacked against them. I see the feelings of uncertainty in this population time and time again. It stems from this deep-rooted ableism, a lack of money and navigating a system that seems weighted against them. Comparison feeding the feeling of not matching up As someone with a (mostly invisible) disability, I am guilty of comparing myself to others. From my best friend who looked a stone lighter on a night out when she popped on her 6″ stilettos, while I donned sensible flats. To the mums in the playground with their perfect car and child and hair that seemed to have it all. Comparison was fueling the feelings of not being good enough that stemmed from my body letting me down. What I have come to realize is that no one actually has it all, least of all the mum who hid behind her perfect life to hide her own crushing insecurities and debt. Facing my imposter feelings As I have aged and am now well into my 40s, I can look back on my life with reflective eyes, both on the progression of my chronic illnesses, my work, my growing family and my feelings of being an imposter. My feelings of being a fraud have pushed me out of my comfort zone at many times during my life, like when my tutor said I wasn’t bright enough to be in his A level biology class (note the first degree), or when I spoke to a room full of pediatric consultants about my children’s conditions and each year when I guest lecture at Brunel University. To give credit where it is due, at points in my life my imposter has truly been the driving force behind my successes. I am still a perfectionist, but I can recognize when that is not serving me and know that done is better than perfect. I know I can play to my strengths because I have many of them and am happy to ditch or delegate the other things to other people. I know asking for help is a sign of strength, not weakness, and by working together with others I can achieve so much more. Will we still have to face gaslighting from the medical profession? Probably. It saddens me to think that this still goes on. I stand strong in appointments with professionals and where our opinion differs, for example where a consultant told us he didn’t actually believe our son’s condition existed at all, (clinically diagnosed by an esteemed colleague). I thank them for their comments and move on… quickly. Do I care that my daughter uses her wheelchair to ride to the park so she has enough energy to play while she is there and still be awake at teatime? Of course not! Do we get funny looks when she gets out of her wheelchair and her older brother shouts, “It’s a miracle!” for all to hear? Most definitely, but we laugh and carry on with our day. What I am noticing is that I am raising children with their own health issues who are confident and proud of who they are and of all their abilities and achievements. Disabilities or not, they have a strong and positive self-concept and I am proud of each of them as they grow. What has changed over the years is not my disability or illness or the world in which I live, but my own thought processes surrounding everything to do with my life and my health. My mindset, my own attitude towards myself and my illness has grown, and what has followed is a freedom I could have only dreamed of in my early 30s. Do I wish I could wear high heels? Sometimes. But if that meant giving up who I have become, I will keep this version, thanks.

Sarah Wells

8 Ways Imposter Syndrome Shows Up in Chronic Illness

Have you ever felt like you don’t belong? Like any second now, your friends or workmates will discover that you are a fraud? Do you ever think your successes are attributed to luck, rather than your own skills or qualifications? Or, do you try to keep more and more balls juggling in the air, always trying to maintain impossibly high standards, and with each success you achieve, the greater the feeling that you aren’t enough? If so, you’ve probably experienced imposter syndrome, right along with an estimated 70% of the population. Imposter syndrome was first described back in the late 1970s by psychologists Pauline Rose Clance and Suzanne Imes who recognized that this imposter phenomenon was particularly prevalent amongst a select group of high-achieving women. But, it is known to affect all kinds of people from all walks of life, men, women, medical students and managers. Even international superstars are not immune to its effects. Emma Watson, star of the Harry Potter movies, told Rookie magazine, “It’s almost like the better I do, the more my feeling of inadequacy actually increases, because I’m just going, ‘Any moment, someone’s going to find out I’m a total fraud, and that I don’t deserve any of what I’ve achieved.” More and more, imposter syndrome is being seen in marginalized groups and shows up regularly in the disabled and chronic illness communities. It makes perfect sense that your feelings of self-doubt and being a fraud are more likely to show up if you have grown up belonging to a group that was historically believed to be less capable. According to the Department of Health, 15 million people in England have one or more long-term health conditions, and the number of people with multiple chronic illnesses is rising. These are conditions that cannot be cured in most cases, but which can have a major impact on people’s everyday lives. Aside from the physical symptoms, people with long-term conditions are two to three times more likely to experience mental health problems than the general population, and with 15% of all long-term conditions seen in young adults aged 11-15, this group is too important to ignore. With the pressures in society increasing, imposter syndrome is likely to be seen more and more. How does imposter syndrome show up when you have a chronic illness or disability? The more I delve into this topic, the more I can recognize my imposter showing up for me during the different stages of my chronic illness journey. As a young adult before my diagnosis, after diagnosis (while simultaneously trying to juggle work and hide from everyone the struggles with my health), when I was a new mum (and my health crashed to an all-time low), and even now, when I feel like I am not well enough to be “normal” but don’t look disabled enough to fit into that space either. Dr. Valerie Young has categorized imposter syndrome into five subgroups in her book, “The Secret Thoughts of Successful Women: Why Capable People Suffer From the Imposter Syndrome and How to Thrive in Spite of It.” These categories are the Perfectionist, the Superhero, the Expert, the Soloist, and the Natural Genius. I can recognize elements of myself in most of these Imposter archetypes, particularly the perfectionist, the expert and the superhero. Feeling like a fraud in your own body I was diagnosed in my 20s with Charcot Marie Tooth disease (CMT) and in my 30s with Ehlers-Danlos syndrome (hEDS), despite living with the symptoms since being a small child, at points hospitalized and unable to walk. I encountered decades of normal blood test results and doctors telling me that there was nothing wrong, when in fact the doctors were never looking in the right place. Now we know that imposter syndrome makes you feel like a phony. Imagine being told all your life that your symptoms are in your head, that the pain that you are experiencing has no cause, so much so that you begin to doubt that it is real yourself. Then when, often as an adult, you finally get a diagnosis you still doubt yourself. The decades of feeling like a fraud in your own body are hard to shift. When you feel pain, even after the validation of a diagnosis, you question if it is as bad as you are imagining. This feeling of being an imposter can be as debilitating as the pain itself. Imposter syndrome and refusing your own success These feelings spilled over into my studies at university. I came from a very working-class background and was the first person in my family to go to Uni. My symptoms continued throughout my teens and my time studying and I began to just push them aside more and more. If no one could find a reason then I must be imagining it, right? Dislocations would happen more often than brushing my teeth and I could relocate my patella as easily as zipping up my trousers. I worked hard and my grades steadily got better and better and I left university with a first degree. But, I didn’t believe that I deserved it, nor had I earned it and I put it all down to a fluke. When applying for jobs, I would often downplay my expertise even though I was genuinely more skilled than the other candidates. Thankfully, they saw me for who I was, sat in front of them with the skills I possessed and viewed my modesty as an admirable quality rather than the imposter around my neck holding me hostage. Is your imposter making you doubt your symptoms or disability? Occasionally I have to use a wheelchair to get about when I can’t weight bear, such as if my labral tear or hip impingement is flaring or if I have had a dislocation. There have been points over the last few years where our son would not have been able to leave the house without one. And, our daughter uses a wheelchair regularly when out and about to manage pain and fatigue. We can walk, mostly we look well (although that is not always the case with my son, but you generally won’t see him on those days), and we are happy. Which begs the question: where do we fit? Using a wheelchair part-time can make you feel like a fraud and question your reasons for using it at all. Should I just manage without, even if it leaves me unable to walk for the next few days? That nagging doubt begins to creep back in. Imposter syndrome fueled by medical gaslighting With my diagnoses, I entered two worlds: One where I had a genetic test to confirm it (CMT) and one where I didn’t (hEDS). And what I have noted time and time again is that the imposter phenomenon is far more present in the latter due to the continuing doubt from the medical community that hEDS exists at all. Similar practices are echoed in the ME (myalgic encephalomyelitis) community, another condition that at present has no conclusive test to diagnose. Medical practitioners gaslight patients by blaming their illness or symptoms on psychological factors, or by denying a patient’s illness entirely, for example by wrongly telling patients that they are not sick. After enduring decades of “normal” test results, I was adamant that I did not need nor want any support with my psychological wellbeing. I was not going to let anyone tell me that these conditions were in my head. This narrative caused by medical gaslighting is damaging, many people with long-term conditions would benefit from support to process their emotions and thoughts surrounding the impact their health condition has on their lives and move forward positively, but like me will refuse it. Being a perfectionist and self-sabotage Being a perfectionist is the imposter avatar I relate to the most. This probably has something to do with my personality type, but also relates to my experiences with disability and chronic illness. As a young teacher quickly progressing through the ranks in school, I placed impossibly high standards on myself to match up to my peers. I worked longer and longer hours, weekends, and volunteered for things that I did not really want to do, all in a bid to prove to others (and myself) that I matched up. That my disability did not need to get in the way and that I did not need special treatment. The truth was that my colleagues probably never thought about my health because I hid it so well and what I projected was so “normal” and capable. I set an impossibly high bar for myself to achieve and made myself sicker in the process. If I had been honest with myself, I may have stayed in the profession. Either way, I would have had a choice. My fear of failure and insecurities had a hand in sabotaging my own success. Believing asking for help is a sign of weakness As a new mother, my body actually started to fall apart. Surgery after surgery came and when I wasn’t recovering from a procedure, I just felt generally awful. On top of that, I felt guilty that I wasn’t the mum to my young son I had visualized in my head. In a bid to prove to the world that I could cope, I tried to do everything on my own, firmly believing that asking for help would be a sign of weakness. I felt ashamed that I couldn’t do everything (although people rarely saw because I didn’t let them). I was always striving to be better, not less than. Looking back with fresh eyes, I can see that this time of my life was actually quite precious. I was present with all of my children every day. Had my body not been falling apart, I would have undoubtedly been trying to conquer the world and having it all. The bond I now have with each of my three children is unbreakable and it is due to the fact that we have always spent so much time together. Ableism fueling imposter syndrome Ableism, the discrimination against disabled people is strong throughout the educational system in the U.K., particularly when you have a disability or medical need but are academically bright. You are entitled to educational accommodations to help with your studies or tests, to level the playing field so to speak, if you get brain fog and need regular rest breaks, or get hand pain when writing and need to use technology or a scribe. Many people with a disability or illness are made to fight for any real support, leaving them with feelings of doubt and questioning if they really deserve the accommodations in the first place. To get the right support in place for my teen, who was too sick to attend school at all took 20 months rather than the 20 weeks suggested by the U.K. government and we ended up in court. Twenty months and a court case to secure at-home online education that is now so commonplace. It’s ridiculous. Many give up as the system is stacked against them. I see the feelings of uncertainty in this population time and time again. It stems from this deep-rooted ableism, a lack of money and navigating a system that seems weighted against them. Comparison feeding the feeling of not matching up As someone with a (mostly invisible) disability, I am guilty of comparing myself to others. From my best friend who looked a stone lighter on a night out when she popped on her 6″ stilettos, while I donned sensible flats. To the mums in the playground with their perfect car and child and hair that seemed to have it all. Comparison was fueling the feelings of not being good enough that stemmed from my body letting me down. What I have come to realize is that no one actually has it all, least of all the mum who hid behind her perfect life to hide her own crushing insecurities and debt. Facing my imposter feelings As I have aged and am now well into my 40s, I can look back on my life with reflective eyes, both on the progression of my chronic illnesses, my work, my growing family and my feelings of being an imposter. My feelings of being a fraud have pushed me out of my comfort zone at many times during my life, like when my tutor said I wasn’t bright enough to be in his A level biology class (note the first degree), or when I spoke to a room full of pediatric consultants about my children’s conditions and each year when I guest lecture at Brunel University. To give credit where it is due, at points in my life my imposter has truly been the driving force behind my successes. I am still a perfectionist, but I can recognize when that is not serving me and know that done is better than perfect. I know I can play to my strengths because I have many of them and am happy to ditch or delegate the other things to other people. I know asking for help is a sign of strength, not weakness, and by working together with others I can achieve so much more. Will we still have to face gaslighting from the medical profession? Probably. It saddens me to think that this still goes on. I stand strong in appointments with professionals and where our opinion differs, for example where a consultant told us he didn’t actually believe our son’s condition existed at all, (clinically diagnosed by an esteemed colleague). I thank them for their comments and move on… quickly. Do I care that my daughter uses her wheelchair to ride to the park so she has enough energy to play while she is there and still be awake at teatime? Of course not! Do we get funny looks when she gets out of her wheelchair and her older brother shouts, “It’s a miracle!” for all to hear? Most definitely, but we laugh and carry on with our day. What I am noticing is that I am raising children with their own health issues who are confident and proud of who they are and of all their abilities and achievements. Disabilities or not, they have a strong and positive self-concept and I am proud of each of them as they grow. What has changed over the years is not my disability or illness or the world in which I live, but my own thought processes surrounding everything to do with my life and my health. My mindset, my own attitude towards myself and my illness has grown, and what has followed is a freedom I could have only dreamed of in my early 30s. Do I wish I could wear high heels? Sometimes. But if that meant giving up who I have become, I will keep this version, thanks.

Sarah Wells

8 Ways Imposter Syndrome Shows Up in Chronic Illness

Have you ever felt like you don’t belong? Like any second now, your friends or workmates will discover that you are a fraud? Do you ever think your successes are attributed to luck, rather than your own skills or qualifications? Or, do you try to keep more and more balls juggling in the air, always trying to maintain impossibly high standards, and with each success you achieve, the greater the feeling that you aren’t enough? If so, you’ve probably experienced imposter syndrome, right along with an estimated 70% of the population. Imposter syndrome was first described back in the late 1970s by psychologists Pauline Rose Clance and Suzanne Imes who recognized that this imposter phenomenon was particularly prevalent amongst a select group of high-achieving women. But, it is known to affect all kinds of people from all walks of life, men, women, medical students and managers. Even international superstars are not immune to its effects. Emma Watson, star of the Harry Potter movies, told Rookie magazine, “It’s almost like the better I do, the more my feeling of inadequacy actually increases, because I’m just going, ‘Any moment, someone’s going to find out I’m a total fraud, and that I don’t deserve any of what I’ve achieved.” More and more, imposter syndrome is being seen in marginalized groups and shows up regularly in the disabled and chronic illness communities. It makes perfect sense that your feelings of self-doubt and being a fraud are more likely to show up if you have grown up belonging to a group that was historically believed to be less capable. According to the Department of Health, 15 million people in England have one or more long-term health conditions, and the number of people with multiple chronic illnesses is rising. These are conditions that cannot be cured in most cases, but which can have a major impact on people’s everyday lives. Aside from the physical symptoms, people with long-term conditions are two to three times more likely to experience mental health problems than the general population, and with 15% of all long-term conditions seen in young adults aged 11-15, this group is too important to ignore. With the pressures in society increasing, imposter syndrome is likely to be seen more and more. How does imposter syndrome show up when you have a chronic illness or disability? The more I delve into this topic, the more I can recognize my imposter showing up for me during the different stages of my chronic illness journey. As a young adult before my diagnosis, after diagnosis (while simultaneously trying to juggle work and hide from everyone the struggles with my health), when I was a new mum (and my health crashed to an all-time low), and even now, when I feel like I am not well enough to be “normal” but don’t look disabled enough to fit into that space either. Dr. Valerie Young has categorized imposter syndrome into five subgroups in her book, “The Secret Thoughts of Successful Women: Why Capable People Suffer From the Imposter Syndrome and How to Thrive in Spite of It.” These categories are the Perfectionist, the Superhero, the Expert, the Soloist, and the Natural Genius. I can recognize elements of myself in most of these Imposter archetypes, particularly the perfectionist, the expert and the superhero. Feeling like a fraud in your own body I was diagnosed in my 20s with Charcot Marie Tooth disease (CMT) and in my 30s with Ehlers-Danlos syndrome (hEDS), despite living with the symptoms since being a small child, at points hospitalized and unable to walk. I encountered decades of normal blood test results and doctors telling me that there was nothing wrong, when in fact the doctors were never looking in the right place. Now we know that imposter syndrome makes you feel like a phony. Imagine being told all your life that your symptoms are in your head, that the pain that you are experiencing has no cause, so much so that you begin to doubt that it is real yourself. Then when, often as an adult, you finally get a diagnosis you still doubt yourself. The decades of feeling like a fraud in your own body are hard to shift. When you feel pain, even after the validation of a diagnosis, you question if it is as bad as you are imagining. This feeling of being an imposter can be as debilitating as the pain itself. Imposter syndrome and refusing your own success These feelings spilled over into my studies at university. I came from a very working-class background and was the first person in my family to go to Uni. My symptoms continued throughout my teens and my time studying and I began to just push them aside more and more. If no one could find a reason then I must be imagining it, right? Dislocations would happen more often than brushing my teeth and I could relocate my patella as easily as zipping up my trousers. I worked hard and my grades steadily got better and better and I left university with a first degree. But, I didn’t believe that I deserved it, nor had I earned it and I put it all down to a fluke. When applying for jobs, I would often downplay my expertise even though I was genuinely more skilled than the other candidates. Thankfully, they saw me for who I was, sat in front of them with the skills I possessed and viewed my modesty as an admirable quality rather than the imposter around my neck holding me hostage. Is your imposter making you doubt your symptoms or disability? Occasionally I have to use a wheelchair to get about when I can’t weight bear, such as if my labral tear or hip impingement is flaring or if I have had a dislocation. There have been points over the last few years where our son would not have been able to leave the house without one. And, our daughter uses a wheelchair regularly when out and about to manage pain and fatigue. We can walk, mostly we look well (although that is not always the case with my son, but you generally won’t see him on those days), and we are happy. Which begs the question: where do we fit? Using a wheelchair part-time can make you feel like a fraud and question your reasons for using it at all. Should I just manage without, even if it leaves me unable to walk for the next few days? That nagging doubt begins to creep back in. Imposter syndrome fueled by medical gaslighting With my diagnoses, I entered two worlds: One where I had a genetic test to confirm it (CMT) and one where I didn’t (hEDS). And what I have noted time and time again is that the imposter phenomenon is far more present in the latter due to the continuing doubt from the medical community that hEDS exists at all. Similar practices are echoed in the ME (myalgic encephalomyelitis) community, another condition that at present has no conclusive test to diagnose. Medical practitioners gaslight patients by blaming their illness or symptoms on psychological factors, or by denying a patient’s illness entirely, for example by wrongly telling patients that they are not sick. After enduring decades of “normal” test results, I was adamant that I did not need nor want any support with my psychological wellbeing. I was not going to let anyone tell me that these conditions were in my head. This narrative caused by medical gaslighting is damaging, many people with long-term conditions would benefit from support to process their emotions and thoughts surrounding the impact their health condition has on their lives and move forward positively, but like me will refuse it. Being a perfectionist and self-sabotage Being a perfectionist is the imposter avatar I relate to the most. This probably has something to do with my personality type, but also relates to my experiences with disability and chronic illness. As a young teacher quickly progressing through the ranks in school, I placed impossibly high standards on myself to match up to my peers. I worked longer and longer hours, weekends, and volunteered for things that I did not really want to do, all in a bid to prove to others (and myself) that I matched up. That my disability did not need to get in the way and that I did not need special treatment. The truth was that my colleagues probably never thought about my health because I hid it so well and what I projected was so “normal” and capable. I set an impossibly high bar for myself to achieve and made myself sicker in the process. If I had been honest with myself, I may have stayed in the profession. Either way, I would have had a choice. My fear of failure and insecurities had a hand in sabotaging my own success. Believing asking for help is a sign of weakness As a new mother, my body actually started to fall apart. Surgery after surgery came and when I wasn’t recovering from a procedure, I just felt generally awful. On top of that, I felt guilty that I wasn’t the mum to my young son I had visualized in my head. In a bid to prove to the world that I could cope, I tried to do everything on my own, firmly believing that asking for help would be a sign of weakness. I felt ashamed that I couldn’t do everything (although people rarely saw because I didn’t let them). I was always striving to be better, not less than. Looking back with fresh eyes, I can see that this time of my life was actually quite precious. I was present with all of my children every day. Had my body not been falling apart, I would have undoubtedly been trying to conquer the world and having it all. The bond I now have with each of my three children is unbreakable and it is due to the fact that we have always spent so much time together. Ableism fueling imposter syndrome Ableism, the discrimination against disabled people is strong throughout the educational system in the U.K., particularly when you have a disability or medical need but are academically bright. You are entitled to educational accommodations to help with your studies or tests, to level the playing field so to speak, if you get brain fog and need regular rest breaks, or get hand pain when writing and need to use technology or a scribe. Many people with a disability or illness are made to fight for any real support, leaving them with feelings of doubt and questioning if they really deserve the accommodations in the first place. To get the right support in place for my teen, who was too sick to attend school at all took 20 months rather than the 20 weeks suggested by the U.K. government and we ended up in court. Twenty months and a court case to secure at-home online education that is now so commonplace. It’s ridiculous. Many give up as the system is stacked against them. I see the feelings of uncertainty in this population time and time again. It stems from this deep-rooted ableism, a lack of money and navigating a system that seems weighted against them. Comparison feeding the feeling of not matching up As someone with a (mostly invisible) disability, I am guilty of comparing myself to others. From my best friend who looked a stone lighter on a night out when she popped on her 6″ stilettos, while I donned sensible flats. To the mums in the playground with their perfect car and child and hair that seemed to have it all. Comparison was fueling the feelings of not being good enough that stemmed from my body letting me down. What I have come to realize is that no one actually has it all, least of all the mum who hid behind her perfect life to hide her own crushing insecurities and debt. Facing my imposter feelings As I have aged and am now well into my 40s, I can look back on my life with reflective eyes, both on the progression of my chronic illnesses, my work, my growing family and my feelings of being an imposter. My feelings of being a fraud have pushed me out of my comfort zone at many times during my life, like when my tutor said I wasn’t bright enough to be in his A level biology class (note the first degree), or when I spoke to a room full of pediatric consultants about my children’s conditions and each year when I guest lecture at Brunel University. To give credit where it is due, at points in my life my imposter has truly been the driving force behind my successes. I am still a perfectionist, but I can recognize when that is not serving me and know that done is better than perfect. I know I can play to my strengths because I have many of them and am happy to ditch or delegate the other things to other people. I know asking for help is a sign of strength, not weakness, and by working together with others I can achieve so much more. Will we still have to face gaslighting from the medical profession? Probably. It saddens me to think that this still goes on. I stand strong in appointments with professionals and where our opinion differs, for example where a consultant told us he didn’t actually believe our son’s condition existed at all, (clinically diagnosed by an esteemed colleague). I thank them for their comments and move on… quickly. Do I care that my daughter uses her wheelchair to ride to the park so she has enough energy to play while she is there and still be awake at teatime? Of course not! Do we get funny looks when she gets out of her wheelchair and her older brother shouts, “It’s a miracle!” for all to hear? Most definitely, but we laugh and carry on with our day. What I am noticing is that I am raising children with their own health issues who are confident and proud of who they are and of all their abilities and achievements. Disabilities or not, they have a strong and positive self-concept and I am proud of each of them as they grow. What has changed over the years is not my disability or illness or the world in which I live, but my own thought processes surrounding everything to do with my life and my health. My mindset, my own attitude towards myself and my illness has grown, and what has followed is a freedom I could have only dreamed of in my early 30s. Do I wish I could wear high heels? Sometimes. But if that meant giving up who I have become, I will keep this version, thanks.

Sarah Wells

How Easily Social Media Can Hide the Reality of Chronic Illness

The explosion of social media over the last 15 years has opened doors for people in many ways. It has the power to connect like-minded people all over the world, at any time, it gives instant feedback and increases your visibility. In the world of chronic illness, it has given people the power to educate themselves about their conditions, to share and learn from each other’s expertise, allowing them to become truly empowered in their own health and wellness so they can work with health professionals to manage their conditions long-term. Personally, I have learnt so much online, instant access to information fuels my desire to know more. I have connected with some truly amazing people from all over the world who I wouldn’t have had the opportunity to do otherwise, and it has opened doors for me to raise awareness about living with chronic illness in schools, hospitals and universities. However, we must be mindful this virtual world is just a snapshot of reality. People can be who they want to be. The shiny pictures of your friend’s new house hide the mortgage repayments they struggle to meet each month. The beautiful, smiling family photos mask the fact their marriage is being held together by a thread. Makeup and a smile can be a beautiful mask for depression , grief, chronic illness or pain. Let me show you what I mean. I’m going to show you a peek into our lives to highlight what you see on my social media feed is not always all that it seems. I took some lovely family photos on a trip to London’s South Bank a couple of years ago. We look like everybody else, minding our own business and enjoying the sights. What those smiley photos of my family don’t show you is the reason for our day out in London was another road trip to one of the city’s many specialist hospitals. An attempt to make a “day of it” once we had traveled into town. They don’t let you know about the conversations with my husband deciding if we should hire a wheelchair for the day for my son or if he could manage a few hours out with us without it. You don’t see that my daughter used her wheelchair for most of the day, but hopped out for the photo opportunities with her brothers. The smiles hide the fact my daughter is feeling poorly with a sore throat, and by the end of the day, she said her heart hurts just because she has stood up out of her chair. You don’t know the reason we had a few little sit-downs along by the river was not the soak up the sights of the South Bank, but to pace and rest on the way to our destination. Due to my son coming over unwell and clammy or because I just had to take the weight off my feet for a minute. It doesn’t show in the photos the motivational speech by the Lego artist at the start of the exhibition truly struck a chord with me. As he talked so eloquently about his inspiration for the exhibition and how everyone is a superhero and can overcome life’s adversities. He could have been talking just to me. My smile and makeup mask the fact every step I took was excruciating as my knee is finally falling apart and is bone-on-bone in the joint as I walk. And by the time we had looked around the exhibition, the toes on one of my feet literally felt like they were on fire and cramping all at the same time. The photos don’t show you that when we stopped for food, the first thing we ordered was tap water so three of us could top up on our pain meds. They do not show you the next morning my daughter was on the sofa under a blanket with a heart rate monitor on her finger. It kept jumping to the high 140s as she was still feeling poorly and her autonomic system was just out of whack. Or that our son did not really surface for a few days as the inevitable payoff for our day pursued. You see, this is the reality of living with a chronic illness social media rarely shows. I love the fact we can share in life’s triumphs, that I can read positive things on people’s news feeds, smiling children, happy couples. Lord knows we need to celebrate those things more than most, but we need to remember an afternoon out doesn’t mean we are “cured,” that we aren’t tired or hurting or going to pay terribly for it later. A smiling face, great lighting, a photo filter, just like a shiny new car, often masks the truth and that is never more true than in the world of social media. It is important not to feel threatened by or envious of the false reality we see every day. Comparing yourself to others. We typically compare the worst we know of ourselves to the best we presume about others. We are all too unique to typically compare ourselves fairly to another. Other than never truly knowing the full picture about someone else’s life, you must remember you are unrepeatable, your talents, successes and value in this world are unique solely to you. How can that ever be compared fairly to someone else? At the end of the day, when you waste your time focusing on comparing yourself to someone else, you are concentrating on the wrong thing. There is only one life you have control over at the end of the day and that’s yours. It is important to remind yourself no one’s life is as perfect as their social media reels may show and no one is living an untroublesome life, whether you are close enough to know about it or not. Finding inspiration and learning from others is wise. Humans are amazing and there is so much knowledge we can acquire from each other, but there is a fine line between this and self-comparison. Work on comparing yourself with yourself. Spend your time and energy on being the very best version of you. Commit to looking after yourself physically, emotionally and to grow a little more each day. Learn to celebrate your wins without comparing them to someone’s shiny life on the internet. Remember, no one’s life is as perfect as their social media feed.

Sarah Wells

Chronic Illnesses: How I Really Feel When I Say, ‘I’m Fine’

I’m fine. I use this reply all the time when people casually ask me how I am. Is it the truth? What does “I’m fine” really mean? I’m fine. I dislocated my knee this morning and sat on the floor for half an hour wondering how to get up and get all the kids breakfast before school or manage to drive them there. I’m fine. My wrist gave way as I lifted a pizza out of the oven for lunch. This made me catch the tray on the counter, which in turn made me bounce the tray down on my other arm, leaving three lovely zebra-striped burn marks. I’m fine. I can’t seem to take a breath today. It’s shallow and fast as my autonomic system is struggling to balance itself. I feel like I’m wading through mud. I’m fine. I stepped on a stone at the end of a really nice walk (it was literally 10 yards from the front door). I sprained my ankle and feel over like a seesaw — ankle, knee, hip, elbow, shoulder in perfect succession — and I finally stopped as my face skimmed the floor. I also managed to cut open my leg through denim. I’m fine. My daughter is screaming uncontrollably in a combination of pain, exhaustion and helplessness. After pain relief, a massage and a warm bath, I can do no more to help her but to gently hold her and reassure her that she’ll be OK. I’m fine. I fell twice while I was out for a walk pushing my daughter in her wheelchair. Today (well, most days actually) walking without looking at my feet seems to render me incapable of staying upright at all. I’m beginning to regret wearing shorts with my two scabby knees and a cut on the top of one foot. I’m fine. We’ve spent the last 12 hours traveling across London from one hospital to another for emergency brain scans for our son after they found pressure behind his eyes and his peripheral vision affected. Thankfully, they ruled out a mass. It was he longest 12 hours of my life. I’m fine. I got barely any sleep, and when I finally get up, I realize that a bone has subluxated somewhere in my foot. Bearing weight on it is agony. Actually, sitting is agony. But the kids have an early orthotics appointment at the hospital, church services and school, so I brace my foot as best I can. I manage to get an appointment five days later to manipulate it back into place. I’m fine. I learn that my child’s class teacher has decided (all by herself) not to apply her shoulder brace for the last six months in school — the very thing needed to keep her shoulder safe from a dislocation during play times and PE. I’m fine. As I stood up in the middle of my Pilates class to change position from lying to standing, the sudden pooling of blood in my legs and the inability of my heart to pump enough blood to my brain makes me hot and clammy. As if in slow motion, the room started to spin as I began to pass out. I’m fine. My son came home really tired to the point he can barely string a sentence together. I learn his new teacher is refusing his requests for water in the afternoons even though the importance of hydration is clearly written into his care plan. I’m fine. Sometimes I feel like I live in a parallel universe as I talk to my friends about their lives. Their worries and hopes can feel a million miles away from mine. I’m fine. I had a wonderful day out with my family yesterday walking, laughing and picnicking. We even managed a little dancing. But today, I am paying for my fun. Breathless, my heart doesn’t know what it’s doing, and I struggle to even sit awake on the sofa. I’m fine. My daughter yelps every time that she moves in bed as her hip partially dislocates, and I read her to sleep to distract her from the pain. I’m fine. I fell spectacularly into the Thames as I saved my daughter from stumbling along a narrow bank. Spraining my ankle and tweaking something to my right arm left me incapable of holding a cup of tea. I’m fine. It’s my second migraine in three days, and this one has really floored me. My arms are heavy, my face is numb and I feel like a brass band is playing in my head. I’m fine. Today I practiced true calmness under pressure as my son went into shock after breaking his wrist. I kissed him as he closed his eyes as the doctors manipulated the joint back into alignment. My heart broke a little. I’m fine. My rib is out and subluxated. As I drive to school to collect the kids, I still can’t get it to relocate. As I stand in the playground making small talk, it really hurts to breathe. I’m fine. Those two little words have become my mask that I hide behind to cope with my normal day to day. I like those words, they help me show the world (and my kids) there is more to life than this. I don’t know where I would be without them. I’m just fine. Follow this journey on My Stripy Life. We want to hear your story. Become a Mighty contributor here . Image via Thinkstock Images

Sarah Wells

Ehlers-Danlos Syndrome and Faking Chronic Illness Symptoms

I fake my Ehlers-Danlos syndrome (EDS) symptoms all the time. Every day. For as long as I can remember. It is second nature; it’s why I am so good at it. Now I don’t mean I’m faking the actual symptoms of my condition, making them up or exaggerating them. They are very real to me, and they are ever-present in my life. Quite the opposite, in fact — because of the invisibility of EDS, I have become a master at faking being “normal.” Here are the top 20 ways I have learned to conceal my illness on a daily basis and to blend with the masses — to appear to be “normal.” 1. Smiling I make a huge effort to have a happy life and try not to let things get me down. Just because I am happy while being ill doesn’t mean my conditions have disappeared. It simply means I have chosen to be happy in spite of my illness, which is no mean feat. I have mastered the “Fine, thanks” response when someone asks me how I am — I don’t believe anyone honestly wants to hear the truth! It’s important to be happy. It’s good for your health. 2. Makeup I put my face on every single day. It is my mask for the real world and I like wearing it. Only those who know me well can tell how I am feeling behind the smile and the makeup, by looking into my eyes. Even if it’s just a bit of mascara and a sweep of blush, it makes me feel better about the day ahead, more human. 3. Ditching the Kettle I have boiling water plumbed in because I can’t lift a kettle without a dislocation. 4. Holding a Pushchair When my children were young, my mobility was at its worst. I would get out the buggy to hold on to when I walked along, even if the children didn’t need to sit in it. I would let them hold on and walk slowly with me while it held me up. I miss the fact that they are all too big for a pushchair. 5. Leaning Instead of Standing Standing is hard work 1. because of pain and 2. because standing still makes me dizzy, and when things are bad I can be clammy, shivery, breathless and can even faint when upright. You will notice me just propping myself up on a table or a doorway. 6. Fidgeting Sitting and standing for any length of time is uncomfortable and moving just helps. Fidgeting when I’m standing, calf pumps, fist pumps or squeezing a stress ball hidden deep in my coat pocket can also get the blood pumping to avoid me passing out. 7. Standing Up Slowly Always, to minimize the head rush and dizziness. 8. Pacing Myself I am driven; I like getting loads done, but I would find that I would push and push only to crash later. Pacing used to be my enemy, but I have had to work hard to make it my friend. All of my daily activities are paced and no one would ever know! It increases the amount I can achieve over a given period instead of feeding into the boom-and-bust cycle. 9. Hiding Fatigue You can’t see fatigue, unless you know me well, and on the days when my fatigue is at its worst, you won’t see me at all because I physically cannot get out of bed or leave the house. My life is planned 24/7 to manage this element, but sometimes it creeps up on me and catches me out. I have collapsed before, unable to put one foot in front of the other, and been rushed to hospital. People won’t know or understand how bad this can get because they just wont see it. 10. Managing Pain I have become an expert at hiding my pain (and I have a pretty high pain threshold), and you won’t see the amount of medication I take, the ice, wheat cushions, massage, hot baths, propping my joints with anything just to get comfy. I am a master of disguise, too. I can be standing, smiling and chatting with someone with a rib subluxated, unable to relocate it, and unless I knew you well I wouldn’t even tell you! 11. Planning If I do have something particular to do on a certain day, then an immense amount of planning goes into it. I was still paying for a Spooky Walk for Halloween a week later in terms of pain and autonomic dysfunction, because I had a meal out two days before and didn’t plan enough time for my body to recover in between. 12. Avoiding Obstacles This has become like second nature. This time of year, just walking to the car there are obstacles. The blanket of autumn leaves may look pretty, but in the dry they mask the unevenness of the pavement beneath, and in the wet they are slippery. I always walk around things where I can or take another route. 13. Wearing a Vest I have the ability to stand in 30 degrees Celsius heat in the summer and still have goosebumps. I wear a vest all year round. I’m also fond of a scarf, gloves and hat. 14. Orthotics and Braces These are hidden in my shoes, under my jeans. Unless something visible like my wrist or thumb is braced, you would never know. There was one time this year my ankle was in fact braced, as it was subluxated and wouldn’t relocate. A mom at school spotted it and questioned if I was wearing a tag! What she didn’t notice was the excruciating pain on my face as I had to bear weight — I have learned to hide it so well. 15. Tight Clothes Skinny jeans aren’t a fashion statement for me; they are a necessity to hold my hips and pelvis in place and increase proprioception to my joints. 16. Eating Well Eating small, regular meals helps me manage a whole host of gastro and autonomic symptoms, as does eating gluten-free. If you went out for dinner with me, would you know by my choices? 17. Being Vague With Plans This is another one of my coping methods, I can never tell how I will be feeling from one day to the next, let alone a week or two in advance, so I tend not to make definite plans unless I have to. 18 . Linking Arms With a Friend To steady myself perhaps because I’m hurting or if I’m walking somewhere tricky with slippy leaves, a wet floor or if it’s icy. 19. Seeing Friends Making time for a regular cuppa with friends to chat about anything else but EDS, health and hospitals. 20. A Sense of Humor This is so important when faking being “normal.” Being able to laugh at yourself and having the ability to look back on situations with a smile (because there are many) is a must. So when someone calls me a “faker,” in a way, they are right. I have become a master at concealing EDS to just live. It’s my life, and I am going to make the most of it and will not apologize for that. EDS is a huge part of who I am, and it never goes away, but I am committed to working hard so it doesn’t become all I am. The author, Sarah Follow this journey on My Stripy Life. The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to mentalhealth@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Sarah Wells

Ehlers-Danlos Syndrome and Faking Chronic Illness Symptoms

I fake my Ehlers-Danlos syndrome (EDS) symptoms all the time. Every day. For as long as I can remember. It is second nature; it’s why I am so good at it. Now I don’t mean I’m faking the actual symptoms of my condition, making them up or exaggerating them. They are very real to me, and they are ever-present in my life. Quite the opposite, in fact — because of the invisibility of EDS, I have become a master at faking being “normal.” Here are the top 20 ways I have learned to conceal my illness on a daily basis and to blend with the masses — to appear to be “normal.” 1. Smiling I make a huge effort to have a happy life and try not to let things get me down. Just because I am happy while being ill doesn’t mean my conditions have disappeared. It simply means I have chosen to be happy in spite of my illness, which is no mean feat. I have mastered the “Fine, thanks” response when someone asks me how I am — I don’t believe anyone honestly wants to hear the truth! It’s important to be happy. It’s good for your health. 2. Makeup I put my face on every single day. It is my mask for the real world and I like wearing it. Only those who know me well can tell how I am feeling behind the smile and the makeup, by looking into my eyes. Even if it’s just a bit of mascara and a sweep of blush, it makes me feel better about the day ahead, more human. 3. Ditching the Kettle I have boiling water plumbed in because I can’t lift a kettle without a dislocation. 4. Holding a Pushchair When my children were young, my mobility was at its worst. I would get out the buggy to hold on to when I walked along, even if the children didn’t need to sit in it. I would let them hold on and walk slowly with me while it held me up. I miss the fact that they are all too big for a pushchair. 5. Leaning Instead of Standing Standing is hard work 1. because of pain and 2. because standing still makes me dizzy, and when things are bad I can be clammy, shivery, breathless and can even faint when upright. You will notice me just propping myself up on a table or a doorway. 6. Fidgeting Sitting and standing for any length of time is uncomfortable and moving just helps. Fidgeting when I’m standing, calf pumps, fist pumps or squeezing a stress ball hidden deep in my coat pocket can also get the blood pumping to avoid me passing out. 7. Standing Up Slowly Always, to minimize the head rush and dizziness. 8. Pacing Myself I am driven; I like getting loads done, but I would find that I would push and push only to crash later. Pacing used to be my enemy, but I have had to work hard to make it my friend. All of my daily activities are paced and no one would ever know! It increases the amount I can achieve over a given period instead of feeding into the boom-and-bust cycle. 9. Hiding Fatigue You can’t see fatigue, unless you know me well, and on the days when my fatigue is at its worst, you won’t see me at all because I physically cannot get out of bed or leave the house. My life is planned 24/7 to manage this element, but sometimes it creeps up on me and catches me out. I have collapsed before, unable to put one foot in front of the other, and been rushed to hospital. People won’t know or understand how bad this can get because they just wont see it. 10. Managing Pain I have become an expert at hiding my pain (and I have a pretty high pain threshold), and you won’t see the amount of medication I take, the ice, wheat cushions, massage, hot baths, propping my joints with anything just to get comfy. I am a master of disguise, too. I can be standing, smiling and chatting with someone with a rib subluxated, unable to relocate it, and unless I knew you well I wouldn’t even tell you! 11. Planning If I do have something particular to do on a certain day, then an immense amount of planning goes into it. I was still paying for a Spooky Walk for Halloween a week later in terms of pain and autonomic dysfunction, because I had a meal out two days before and didn’t plan enough time for my body to recover in between. 12. Avoiding Obstacles This has become like second nature. This time of year, just walking to the car there are obstacles. The blanket of autumn leaves may look pretty, but in the dry they mask the unevenness of the pavement beneath, and in the wet they are slippery. I always walk around things where I can or take another route. 13. Wearing a Vest I have the ability to stand in 30 degrees Celsius heat in the summer and still have goosebumps. I wear a vest all year round. I’m also fond of a scarf, gloves and hat. 14. Orthotics and Braces These are hidden in my shoes, under my jeans. Unless something visible like my wrist or thumb is braced, you would never know. There was one time this year my ankle was in fact braced, as it was subluxated and wouldn’t relocate. A mom at school spotted it and questioned if I was wearing a tag! What she didn’t notice was the excruciating pain on my face as I had to bear weight — I have learned to hide it so well. 15. Tight Clothes Skinny jeans aren’t a fashion statement for me; they are a necessity to hold my hips and pelvis in place and increase proprioception to my joints. 16. Eating Well Eating small, regular meals helps me manage a whole host of gastro and autonomic symptoms, as does eating gluten-free. If you went out for dinner with me, would you know by my choices? 17. Being Vague With Plans This is another one of my coping methods, I can never tell how I will be feeling from one day to the next, let alone a week or two in advance, so I tend not to make definite plans unless I have to. 18 . Linking Arms With a Friend To steady myself perhaps because I’m hurting or if I’m walking somewhere tricky with slippy leaves, a wet floor or if it’s icy. 19. Seeing Friends Making time for a regular cuppa with friends to chat about anything else but EDS, health and hospitals. 20. A Sense of Humor This is so important when faking being “normal.” Being able to laugh at yourself and having the ability to look back on situations with a smile (because there are many) is a must. So when someone calls me a “faker,” in a way, they are right. I have become a master at concealing EDS to just live. It’s my life, and I am going to make the most of it and will not apologize for that. EDS is a huge part of who I am, and it never goes away, but I am committed to working hard so it doesn’t become all I am. The author, Sarah Follow this journey on My Stripy Life. The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to mentalhealth@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Sarah Wells

Learning the Names of My Chronic Illnesses

Looking back, “it” had always been there, lurking in the background. But the first real memory I have of it was when I fainted while watching a movie at school. I would have been about 10. From that point on, particularly once puberty started, it really tried to dominate my life with migraines, fainting, dizziness, shakiness and brain fog. It made me tired doing the simplest of things. It made me feel “off” — a lot. Doctors spent my teens testing me for all sorts of things — diabetes, glandular fever — anything to explain the symptoms that were stopping an otherwise healthy teen to get on with her life. But in the end, there were no answers. I just had to get on with it. I got through university and landed a job working full time as a teacher. I loved my work, but it was always there. Every now and then, it would come out of the shadows and really knock me off my feet. When the kids came along, it really kicked my butt. There were times when I didn’t get out of bed for weeks or lift a brush to make my hair look a little neater. If I tried to sit up, I would have pains across my chest like a vice. Walking to the kitchen to make a cup of tea would leave me breathless and shaky. There were times when my husband would find me collapsed on the floor unable to move or speak. The doctors told me it was post-viral ME, but I knew that was just an alias. I wish I knew its real name. When my babies grew, they were all bendy. One was super skillful but faced challenges with stamina and fatigue. It wasn’t going to get them. I started to read and then read some more. Then in my mid-30’s, I finally learned its name. And it turned out that “it” was a combination of chronic illnesses. I learned about dysautonomia/autonomic dysfunction, Ehlers-Danlos syndrome , hypermobility and the role of connective tissue. I now had the puzzle pieces. I could learn to play it at its own game. That’s when the balance of power shifted. The more I learned about it, the more my life became illuminated. I finally understood why my body went into shock after going through labor with my second baby. I understood why I’ll pass out after eating a carb-heavy meal, why I can’t stand for any length of time and why I get goose bumps on a hot day. I also realized that in the nearly 30 years since I have been sharing my life with my chronic illnesses, I’ve been learning how to manage them to keep the symptoms at bay. Many parts of this management have naturally become part of what I do every day. Others, however, take a little more effort. I’m fortunate to finally know the names of my chronic illnesses because at last I fully understand how to make our relationship work. As for my babies, I know that when something is standing in the light, it’s much easier to face. Follow this journey on My Stripy Life. Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines. Lead photo source: Thinkstock Images

Sarah Wells

Ehlers-Danlos Syndrome and Faking Chronic Illness Symptoms

I fake my Ehlers-Danlos syndrome (EDS) symptoms all the time. Every day. For as long as I can remember. It is second nature; it’s why I am so good at it. Now I don’t mean I’m faking the actual symptoms of my condition, making them up or exaggerating them. They are very real to me, and they are ever-present in my life. Quite the opposite, in fact — because of the invisibility of EDS, I have become a master at faking being “normal.” Here are the top 20 ways I have learned to conceal my illness on a daily basis and to blend with the masses — to appear to be “normal.” 1. Smiling I make a huge effort to have a happy life and try not to let things get me down. Just because I am happy while being ill doesn’t mean my conditions have disappeared. It simply means I have chosen to be happy in spite of my illness, which is no mean feat. I have mastered the “Fine, thanks” response when someone asks me how I am — I don’t believe anyone honestly wants to hear the truth! It’s important to be happy. It’s good for your health. 2. Makeup I put my face on every single day. It is my mask for the real world and I like wearing it. Only those who know me well can tell how I am feeling behind the smile and the makeup, by looking into my eyes. Even if it’s just a bit of mascara and a sweep of blush, it makes me feel better about the day ahead, more human. 3. Ditching the Kettle I have boiling water plumbed in because I can’t lift a kettle without a dislocation. 4. Holding a Pushchair When my children were young, my mobility was at its worst. I would get out the buggy to hold on to when I walked along, even if the children didn’t need to sit in it. I would let them hold on and walk slowly with me while it held me up. I miss the fact that they are all too big for a pushchair. 5. Leaning Instead of Standing Standing is hard work 1. because of pain and 2. because standing still makes me dizzy, and when things are bad I can be clammy, shivery, breathless and can even faint when upright. You will notice me just propping myself up on a table or a doorway. 6. Fidgeting Sitting and standing for any length of time is uncomfortable and moving just helps. Fidgeting when I’m standing, calf pumps, fist pumps or squeezing a stress ball hidden deep in my coat pocket can also get the blood pumping to avoid me passing out. 7. Standing Up Slowly Always, to minimize the head rush and dizziness. 8. Pacing Myself I am driven; I like getting loads done, but I would find that I would push and push only to crash later. Pacing used to be my enemy, but I have had to work hard to make it my friend. All of my daily activities are paced and no one would ever know! It increases the amount I can achieve over a given period instead of feeding into the boom-and-bust cycle. 9. Hiding Fatigue You can’t see fatigue, unless you know me well, and on the days when my fatigue is at its worst, you won’t see me at all because I physically cannot get out of bed or leave the house. My life is planned 24/7 to manage this element, but sometimes it creeps up on me and catches me out. I have collapsed before, unable to put one foot in front of the other, and been rushed to hospital. People won’t know or understand how bad this can get because they just wont see it. 10. Managing Pain I have become an expert at hiding my pain (and I have a pretty high pain threshold), and you won’t see the amount of medication I take, the ice, wheat cushions, massage, hot baths, propping my joints with anything just to get comfy. I am a master of disguise, too. I can be standing, smiling and chatting with someone with a rib subluxated, unable to relocate it, and unless I knew you well I wouldn’t even tell you! 11. Planning If I do have something particular to do on a certain day, then an immense amount of planning goes into it. I was still paying for a Spooky Walk for Halloween a week later in terms of pain and autonomic dysfunction, because I had a meal out two days before and didn’t plan enough time for my body to recover in between. 12. Avoiding Obstacles This has become like second nature. This time of year, just walking to the car there are obstacles. The blanket of autumn leaves may look pretty, but in the dry they mask the unevenness of the pavement beneath, and in the wet they are slippery. I always walk around things where I can or take another route. 13. Wearing a Vest I have the ability to stand in 30 degrees Celsius heat in the summer and still have goosebumps. I wear a vest all year round. I’m also fond of a scarf, gloves and hat. 14. Orthotics and Braces These are hidden in my shoes, under my jeans. Unless something visible like my wrist or thumb is braced, you would never know. There was one time this year my ankle was in fact braced, as it was subluxated and wouldn’t relocate. A mom at school spotted it and questioned if I was wearing a tag! What she didn’t notice was the excruciating pain on my face as I had to bear weight — I have learned to hide it so well. 15. Tight Clothes Skinny jeans aren’t a fashion statement for me; they are a necessity to hold my hips and pelvis in place and increase proprioception to my joints. 16. Eating Well Eating small, regular meals helps me manage a whole host of gastro and autonomic symptoms, as does eating gluten-free. If you went out for dinner with me, would you know by my choices? 17. Being Vague With Plans This is another one of my coping methods, I can never tell how I will be feeling from one day to the next, let alone a week or two in advance, so I tend not to make definite plans unless I have to. 18 . Linking Arms With a Friend To steady myself perhaps because I’m hurting or if I’m walking somewhere tricky with slippy leaves, a wet floor or if it’s icy. 19. Seeing Friends Making time for a regular cuppa with friends to chat about anything else but EDS, health and hospitals. 20. A Sense of Humor This is so important when faking being “normal.” Being able to laugh at yourself and having the ability to look back on situations with a smile (because there are many) is a must. So when someone calls me a “faker,” in a way, they are right. I have become a master at concealing EDS to just live. It’s my life, and I am going to make the most of it and will not apologize for that. EDS is a huge part of who I am, and it never goes away, but I am committed to working hard so it doesn’t become all I am. The author, Sarah Follow this journey on My Stripy Life. The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to mentalhealth@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.