Katy Baker

@katy-baker | contributor
I’m Katy and I live with the rare disease Scimitar Syndrome. I have my own podcast called 'my rare disease' all about giving rare disease patients a platform to share their stories and to educate others about how illness can impact different elements of a person's life. I am passionate about raising awareness of rare disease because collectively having a rare disease is not rare, it affects 1 in 15 people worldwide and therefore we need to be heard.
Katy Baker

Going Through Grief Cycles With Rare Disease or Chronic Illness

I think whether you have had a health condition since birth or whether you have acquired one throughout your life, I would say most people have moments/day/weeks/months of finding it emotionally challenging, and that’s totally OK. It may cause anxiety due to your body changing or causing scary symptoms to having low moments of “why me,” or adapting to life where they may not be a cure to your illness or missing out on events with others – of course there are only a few examples. However, I think what a lot of people go through with illness is grief. This may sound ridiculous because you haven’t lost someone, but you are grieving for the life you had planned but now are not able to have. Or you are grieving for perhaps losing your ability to do certain things, maybe losing your employment or relationships with others. I am going to explain each stage of grief a bit more and reassure everyone that you are totally human for experiencing these emotions. Denial: refusing to accept reality and protecting yourself from acceptance. Denial with a chronic illness or rare disease can affect people physically and mentally. Denial can make symptoms or illness worse if a person is in denial because they may be carrying on with day to day tasks that they now either shouldn’t be doing or their body doesn’t have the ability to do anymore. This is tough to deal with because everyone wants to be able to carry out tasks and not be held back, so refusing to accept this is normal. Denial can also affect you emotionally. Adapting to a new life is hard, so sometimes refusing to accept reality is a defensive mechanism rather than perhaps having tough, irrational thoughts towards your illness as these are often harder to cope with. Anger: an intense emotional state involving a strong uncomfortable response. The keywords and phrase that come to mind when thinking about anger as part of the grieving process is “why me?” and “I feel different,” which no ones wants to feel. As people we want to fit in to society and want to be able to keep up with our peers, so being angry towards your rare disease and chronic illness is OK. Some people might feel angry due to their illness because it had stripped parts of them away; whether that is because you used to always be out at social events but now cannot, you might feel angry because you may have lost your job or because you are in pain a lot of the time and therefore resent your condition. Bargaining: feeling vulnerable and helpless. Bargaining can be quite similar to the next stage of grief (depression), but in this stage you may feel like you need or want to regain control of the situation. During this stage you may be thinking of the “what ifs” or “if only,” which can be common with chronic illness or rare disease. With illness, you may be feeling “what if I had gone to the doctor sooner” or “if only I had noticed this symptom before.” But please remember none of this is your fault and sometimes illness can be so much of surprise. Depression: a low mood that lasts for weeks or months and affects your daily life. Depression can affect many people for a variety of reasons, not just those with illness. Depression can be on a huge spectrum from mild thoughts and minimal disruption to your life to experiencing debilitating symptoms and needing treatment or intervention to ensure you are kept safe to yourself and others. Depression with chronic illness or rare disease can occur because you may experience chronic pain and not imagine being able to live the rest of your life in that pain, you may be going through some grueling treatment and not seeing light at the end of the tunnel or you may be going through regular flare-ups resulting in to a poor quality or life and low mood. Of course, they are many other reasons depression could occur and it is different for everyone. Depression can really impact someone’s life and it is important to realize that you are not alone, you deserve support and you are so brave. Acceptance: the process or fact of being received as adequate, valid or suitable. This is the last element of the grief cycle which can really help people with rare disease and chronic illness. Acceptance can really help people adapt to their rare disease and accept feelings of vulnerability when they do arise. Acceptance of a chronic illness can help someone both physically and mentally. Physically because when symptoms or flare-ups do occur, the person can accept that the need to rest or perform self-care tasks which can maintain or improve their condition. Whereas, acceptance can help someone mentally because it isn’t necessarily making anxious or negative thoughts go away, it is about acknowledging them, accepting they do arise from time to time and not getting angry at yourself for struggling with your illness. As you can see, emotions throughout grief can be really hard and for those experiencing illness. You may experience the grief cycle on a regular basis, which can be exhausting physically and mentally. If you feel that you need extra help, there is no shame in reaching out to a counselor, doctor or someone else you can trust. Dealing with a rare disease or chronic illness is tough, so it is OK to get support to lighten the load.

Katy Baker

Going Through Grief Cycles With Rare Disease or Chronic Illness

I think whether you have had a health condition since birth or whether you have acquired one throughout your life, I would say most people have moments/day/weeks/months of finding it emotionally challenging, and that’s totally OK. It may cause anxiety due to your body changing or causing scary symptoms to having low moments of “why me,” or adapting to life where they may not be a cure to your illness or missing out on events with others – of course there are only a few examples. However, I think what a lot of people go through with illness is grief. This may sound ridiculous because you haven’t lost someone, but you are grieving for the life you had planned but now are not able to have. Or you are grieving for perhaps losing your ability to do certain things, maybe losing your employment or relationships with others. I am going to explain each stage of grief a bit more and reassure everyone that you are totally human for experiencing these emotions. Denial: refusing to accept reality and protecting yourself from acceptance. Denial with a chronic illness or rare disease can affect people physically and mentally. Denial can make symptoms or illness worse if a person is in denial because they may be carrying on with day to day tasks that they now either shouldn’t be doing or their body doesn’t have the ability to do anymore. This is tough to deal with because everyone wants to be able to carry out tasks and not be held back, so refusing to accept this is normal. Denial can also affect you emotionally. Adapting to a new life is hard, so sometimes refusing to accept reality is a defensive mechanism rather than perhaps having tough, irrational thoughts towards your illness as these are often harder to cope with. Anger: an intense emotional state involving a strong uncomfortable response. The keywords and phrase that come to mind when thinking about anger as part of the grieving process is “why me?” and “I feel different,” which no ones wants to feel. As people we want to fit in to society and want to be able to keep up with our peers, so being angry towards your rare disease and chronic illness is OK. Some people might feel angry due to their illness because it had stripped parts of them away; whether that is because you used to always be out at social events but now cannot, you might feel angry because you may have lost your job or because you are in pain a lot of the time and therefore resent your condition. Bargaining: feeling vulnerable and helpless. Bargaining can be quite similar to the next stage of grief (depression), but in this stage you may feel like you need or want to regain control of the situation. During this stage you may be thinking of the “what ifs” or “if only,” which can be common with chronic illness or rare disease. With illness, you may be feeling “what if I had gone to the doctor sooner” or “if only I had noticed this symptom before.” But please remember none of this is your fault and sometimes illness can be so much of surprise. Depression: a low mood that lasts for weeks or months and affects your daily life. Depression can affect many people for a variety of reasons, not just those with illness. Depression can be on a huge spectrum from mild thoughts and minimal disruption to your life to experiencing debilitating symptoms and needing treatment or intervention to ensure you are kept safe to yourself and others. Depression with chronic illness or rare disease can occur because you may experience chronic pain and not imagine being able to live the rest of your life in that pain, you may be going through some grueling treatment and not seeing light at the end of the tunnel or you may be going through regular flare-ups resulting in to a poor quality or life and low mood. Of course, they are many other reasons depression could occur and it is different for everyone. Depression can really impact someone’s life and it is important to realize that you are not alone, you deserve support and you are so brave. Acceptance: the process or fact of being received as adequate, valid or suitable. This is the last element of the grief cycle which can really help people with rare disease and chronic illness. Acceptance can really help people adapt to their rare disease and accept feelings of vulnerability when they do arise. Acceptance of a chronic illness can help someone both physically and mentally. Physically because when symptoms or flare-ups do occur, the person can accept that the need to rest or perform self-care tasks which can maintain or improve their condition. Whereas, acceptance can help someone mentally because it isn’t necessarily making anxious or negative thoughts go away, it is about acknowledging them, accepting they do arise from time to time and not getting angry at yourself for struggling with your illness. As you can see, emotions throughout grief can be really hard and for those experiencing illness. You may experience the grief cycle on a regular basis, which can be exhausting physically and mentally. If you feel that you need extra help, there is no shame in reaching out to a counselor, doctor or someone else you can trust. Dealing with a rare disease or chronic illness is tough, so it is OK to get support to lighten the load.

Katy Baker

Going Through Grief Cycles With Rare Disease or Chronic Illness

I think whether you have had a health condition since birth or whether you have acquired one throughout your life, I would say most people have moments/day/weeks/months of finding it emotionally challenging, and that’s totally OK. It may cause anxiety due to your body changing or causing scary symptoms to having low moments of “why me,” or adapting to life where they may not be a cure to your illness or missing out on events with others – of course there are only a few examples. However, I think what a lot of people go through with illness is grief. This may sound ridiculous because you haven’t lost someone, but you are grieving for the life you had planned but now are not able to have. Or you are grieving for perhaps losing your ability to do certain things, maybe losing your employment or relationships with others. I am going to explain each stage of grief a bit more and reassure everyone that you are totally human for experiencing these emotions. Denial: refusing to accept reality and protecting yourself from acceptance. Denial with a chronic illness or rare disease can affect people physically and mentally. Denial can make symptoms or illness worse if a person is in denial because they may be carrying on with day to day tasks that they now either shouldn’t be doing or their body doesn’t have the ability to do anymore. This is tough to deal with because everyone wants to be able to carry out tasks and not be held back, so refusing to accept this is normal. Denial can also affect you emotionally. Adapting to a new life is hard, so sometimes refusing to accept reality is a defensive mechanism rather than perhaps having tough, irrational thoughts towards your illness as these are often harder to cope with. Anger: an intense emotional state involving a strong uncomfortable response. The keywords and phrase that come to mind when thinking about anger as part of the grieving process is “why me?” and “I feel different,” which no ones wants to feel. As people we want to fit in to society and want to be able to keep up with our peers, so being angry towards your rare disease and chronic illness is OK. Some people might feel angry due to their illness because it had stripped parts of them away; whether that is because you used to always be out at social events but now cannot, you might feel angry because you may have lost your job or because you are in pain a lot of the time and therefore resent your condition. Bargaining: feeling vulnerable and helpless. Bargaining can be quite similar to the next stage of grief (depression), but in this stage you may feel like you need or want to regain control of the situation. During this stage you may be thinking of the “what ifs” or “if only,” which can be common with chronic illness or rare disease. With illness, you may be feeling “what if I had gone to the doctor sooner” or “if only I had noticed this symptom before.” But please remember none of this is your fault and sometimes illness can be so much of surprise. Depression: a low mood that lasts for weeks or months and affects your daily life. Depression can affect many people for a variety of reasons, not just those with illness. Depression can be on a huge spectrum from mild thoughts and minimal disruption to your life to experiencing debilitating symptoms and needing treatment or intervention to ensure you are kept safe to yourself and others. Depression with chronic illness or rare disease can occur because you may experience chronic pain and not imagine being able to live the rest of your life in that pain, you may be going through some grueling treatment and not seeing light at the end of the tunnel or you may be going through regular flare-ups resulting in to a poor quality or life and low mood. Of course, they are many other reasons depression could occur and it is different for everyone. Depression can really impact someone’s life and it is important to realize that you are not alone, you deserve support and you are so brave. Acceptance: the process or fact of being received as adequate, valid or suitable. This is the last element of the grief cycle which can really help people with rare disease and chronic illness. Acceptance can really help people adapt to their rare disease and accept feelings of vulnerability when they do arise. Acceptance of a chronic illness can help someone both physically and mentally. Physically because when symptoms or flare-ups do occur, the person can accept that the need to rest or perform self-care tasks which can maintain or improve their condition. Whereas, acceptance can help someone mentally because it isn’t necessarily making anxious or negative thoughts go away, it is about acknowledging them, accepting they do arise from time to time and not getting angry at yourself for struggling with your illness. As you can see, emotions throughout grief can be really hard and for those experiencing illness. You may experience the grief cycle on a regular basis, which can be exhausting physically and mentally. If you feel that you need extra help, there is no shame in reaching out to a counselor, doctor or someone else you can trust. Dealing with a rare disease or chronic illness is tough, so it is OK to get support to lighten the load.

Katy Baker

The Vicious Cycle of Rare Disease and Mental Health

Rare disease affects approximately 1 in 15 people worldwide, according to the World Health Organization; within this approximately 69% have reported having depression and 82% have reported experiencing anxiety and stress. This is no surprise to me due to both my own experience and some of my friends’ experiences. However, mental health diagnosis due to rare disease is much more complicated than it sounds. My mental health “journey” began in January 2018 when I was experiencing low mood, lack of motivation and some really confusing thoughts. I had visited my GP at University once who recommended counseling. I went to a couple of sessions, but found at the time the structure of those sessions was not right for me because it was not about getting over the problem, it was about acknowledging the thoughts and coping with them. After things hadn’t improved, I went back to my GP who gave me some antidepressant medication. Fast forward to after I told my parents about how I was struggling and on to my third type of antidepressant medication and some difficult times along the way, I am now receiving therapy from someone who I really trust and who is really supportive of me. However, I wanted to write this to show that you are not alone. Below are some of the muddling thoughts I have experienced to remind you that these feelings are totally OK and valid to have. Others are worse off OK we might think that others are worse off and that may be the case, but having low mood or anxiety-provoking thoughts about your illness is totally understandable. You might think others are worse off because you see people post things on social media, they maybe talking about it openly or their illness may be visible but that does not mean that you should ignore how you are feeling. If you feel low or anxious, you have a right to regardless of what other people are going through. Not feeling grateful enough for the good days Good and bad days with illness can really creep up on us and we are not prepared for them a lot of the time. Although it is important to acknowledge what you are grateful for, especially when you are able to do more on one particular day, you should not have to feel like you need to be grateful when your body isn’t performing how you want it to  (just because it is better than the day before when in reality it doesn’t have the ability to do what you want to do compared to if you didn’t have your illness). Lack of research into illness so not knowing what to think A lot of rare diseases do not have much information due to them being so complex. Patients can be left to have irrational and worrying thoughts due to not knowing how the illness is going to impact their day to day lives and also other elements including social events, relationships and employments. If we don’t have this information, how are we meant to make sense and eventually accept our condition? Mental health causing physical symptoms There is a big correlation between physical and mental health, but when our illness causes low mood, stress or anxiety that can them cause other physical symptoms resulting in a vicious cycle. A lot of people then feel guilty for feeling low, stressed or anxious because it has caused physical symptoms contributing to their illness which can then cause more emotional symptoms. You get the picture, the cycle then just goes on and on which can be physically and mentally exhausting. Knowing your illness is incurable This one of course is really tough. All we want is to be well, enjoy life and not be held back by anything. When you are experiencing bad health days, particularly if they are regular or lasting a long time, it can be hard to see light at the end of the tunnel or to feel happy with what you do have in life. Knowing your illness is incurable and that you have got to live your life differently than how you wanted to can be incredibly mentally tough. This is only a nugget of information and only some of the thoughts I have. I am sure many others have experienced these things, but I hope it helps you realize that you are not alone and you deserve support.

Katy Baker

Going Through Grief Cycles With Rare Disease or Chronic Illness

I think whether you have had a health condition since birth or whether you have acquired one throughout your life, I would say most people have moments/day/weeks/months of finding it emotionally challenging, and that’s totally OK. It may cause anxiety due to your body changing or causing scary symptoms to having low moments of “why me,” or adapting to life where they may not be a cure to your illness or missing out on events with others – of course there are only a few examples. However, I think what a lot of people go through with illness is grief. This may sound ridiculous because you haven’t lost someone, but you are grieving for the life you had planned but now are not able to have. Or you are grieving for perhaps losing your ability to do certain things, maybe losing your employment or relationships with others. I am going to explain each stage of grief a bit more and reassure everyone that you are totally human for experiencing these emotions. Denial: refusing to accept reality and protecting yourself from acceptance. Denial with a chronic illness or rare disease can affect people physically and mentally. Denial can make symptoms or illness worse if a person is in denial because they may be carrying on with day to day tasks that they now either shouldn’t be doing or their body doesn’t have the ability to do anymore. This is tough to deal with because everyone wants to be able to carry out tasks and not be held back, so refusing to accept this is normal. Denial can also affect you emotionally. Adapting to a new life is hard, so sometimes refusing to accept reality is a defensive mechanism rather than perhaps having tough, irrational thoughts towards your illness as these are often harder to cope with. Anger: an intense emotional state involving a strong uncomfortable response. The keywords and phrase that come to mind when thinking about anger as part of the grieving process is “why me?” and “I feel different,” which no ones wants to feel. As people we want to fit in to society and want to be able to keep up with our peers, so being angry towards your rare disease and chronic illness is OK. Some people might feel angry due to their illness because it had stripped parts of them away; whether that is because you used to always be out at social events but now cannot, you might feel angry because you may have lost your job or because you are in pain a lot of the time and therefore resent your condition. Bargaining: feeling vulnerable and helpless. Bargaining can be quite similar to the next stage of grief (depression), but in this stage you may feel like you need or want to regain control of the situation. During this stage you may be thinking of the “what ifs” or “if only,” which can be common with chronic illness or rare disease. With illness, you may be feeling “what if I had gone to the doctor sooner” or “if only I had noticed this symptom before.” But please remember none of this is your fault and sometimes illness can be so much of surprise. Depression: a low mood that lasts for weeks or months and affects your daily life. Depression can affect many people for a variety of reasons, not just those with illness. Depression can be on a huge spectrum from mild thoughts and minimal disruption to your life to experiencing debilitating symptoms and needing treatment or intervention to ensure you are kept safe to yourself and others. Depression with chronic illness or rare disease can occur because you may experience chronic pain and not imagine being able to live the rest of your life in that pain, you may be going through some grueling treatment and not seeing light at the end of the tunnel or you may be going through regular flare-ups resulting in to a poor quality or life and low mood. Of course, they are many other reasons depression could occur and it is different for everyone. Depression can really impact someone’s life and it is important to realize that you are not alone, you deserve support and you are so brave. Acceptance: the process or fact of being received as adequate, valid or suitable. This is the last element of the grief cycle which can really help people with rare disease and chronic illness. Acceptance can really help people adapt to their rare disease and accept feelings of vulnerability when they do arise. Acceptance of a chronic illness can help someone both physically and mentally. Physically because when symptoms or flare-ups do occur, the person can accept that the need to rest or perform self-care tasks which can maintain or improve their condition. Whereas, acceptance can help someone mentally because it isn’t necessarily making anxious or negative thoughts go away, it is about acknowledging them, accepting they do arise from time to time and not getting angry at yourself for struggling with your illness. As you can see, emotions throughout grief can be really hard and for those experiencing illness. You may experience the grief cycle on a regular basis, which can be exhausting physically and mentally. If you feel that you need extra help, there is no shame in reaching out to a counselor, doctor or someone else you can trust. Dealing with a rare disease or chronic illness is tough, so it is OK to get support to lighten the load.

Katy Baker

Learning From the Positive Aspects of Living With Chronic Pain

Did you know chronic pain affects approximately 1.5 billion people worldwide? And it impacts them differently from persistent yet manageable pain to debilitating symptoms needing multiple hospital admissions, regular medication or even no treatment available? Chronic pain is pain which usually lasts longer than six months, which often doesn’t just cause physical pain, but for many it affects them emotionally too. My chronic pain journey properly began in December 2018 when I experienced back pain. My family and I thought it was due to me doing too much at my trampolining training or my bed at my student house, but we did not think the cause was due to my rare disease scimitar syndrome. After seeing my GP, trying medication and starting physiotherapy, I had some x-rays because things were not improving, and it was impacting me more and more. After tests and consultations, the cause of my back pain was due to only one of my lungs working causing an oxygen imbalance and therefore a kyphosis curve of the spine. We went thinking it was more of an injury type problem which physiotherapy and exercises could improve to a chronic problem needing regular physiotherapy, daily exercises and trialing multiple medications to control the pain. This was something I really did not need on top of my already tough rare disease. But it has genuinely taught me so much, from my admiration for allied health professionals to not taking anything for granted. It may sound a bit cheesy that it has changed my perspective on things, but it really has. First, though there is no cure it has given me the motivation to help myself as much as possible. Of course when there are times where I feel low about my illness, this is hard, but having exercises to do myself and doing my best has really driven me to control my condition as much as possible. Having chronic pain has also changed my perspective on taking things for granted. I have always thought of myself as a grateful person, but having chronic pain has really helped me realize that enjoying the simpler things in life is so important. It has helped me to be thankful for what I have been able to do each day, for example, being able to go for a walk in the fresh air one day or being able to carry out my studies sitting for long periods one day really is something to treasure for me. It is so important to enjoy the good days when they are here because with a lot of chronic pain and chronic illness, symptoms and flare-ups can creep up on you. Although chronic pain can be incredibly difficult to deal with, there are positive aspects of it, and I believe it is important to acknowledge those moments to help your emotional wellbeing. For me, the best part is support from allied health professionals who do not get enough admiration. Without my physiotherapist, things would be very different for me. They work tirelessly to treat the person as a whole while going above and beyond to research about a person’s medical history. I honestly cannot thank my physiotherapist enough and without my chronic pain, I would not be able to get an insight on the work these allied health professionals do to help people’s quality of life. The other best part of my chronic pain is educating others about invisible illness and chronic pain. I can see the world and definitely the world of illness from a different perspective than others, to raise awareness and advocate for this community so our voices are heard. I really do know that with chronic pain it isn’t that easy to feel thankful and acknowledge the good days; everyone has hard days and low moments and that is totally OK. If you are experiencing more low or anxious moments than good days, it is also OK to reach out for help. Chronic pain and chronic illness are tough enough.

Katy Baker

Learning From the Positive Aspects of Living With Chronic Pain

Did you know chronic pain affects approximately 1.5 billion people worldwide? And it impacts them differently from persistent yet manageable pain to debilitating symptoms needing multiple hospital admissions, regular medication or even no treatment available? Chronic pain is pain which usually lasts longer than six months, which often doesn’t just cause physical pain, but for many it affects them emotionally too. My chronic pain journey properly began in December 2018 when I experienced back pain. My family and I thought it was due to me doing too much at my trampolining training or my bed at my student house, but we did not think the cause was due to my rare disease scimitar syndrome. After seeing my GP, trying medication and starting physiotherapy, I had some x-rays because things were not improving, and it was impacting me more and more. After tests and consultations, the cause of my back pain was due to only one of my lungs working causing an oxygen imbalance and therefore a kyphosis curve of the spine. We went thinking it was more of an injury type problem which physiotherapy and exercises could improve to a chronic problem needing regular physiotherapy, daily exercises and trialing multiple medications to control the pain. This was something I really did not need on top of my already tough rare disease. But it has genuinely taught me so much, from my admiration for allied health professionals to not taking anything for granted. It may sound a bit cheesy that it has changed my perspective on things, but it really has. First, though there is no cure it has given me the motivation to help myself as much as possible. Of course when there are times where I feel low about my illness, this is hard, but having exercises to do myself and doing my best has really driven me to control my condition as much as possible. Having chronic pain has also changed my perspective on taking things for granted. I have always thought of myself as a grateful person, but having chronic pain has really helped me realize that enjoying the simpler things in life is so important. It has helped me to be thankful for what I have been able to do each day, for example, being able to go for a walk in the fresh air one day or being able to carry out my studies sitting for long periods one day really is something to treasure for me. It is so important to enjoy the good days when they are here because with a lot of chronic pain and chronic illness, symptoms and flare-ups can creep up on you. Although chronic pain can be incredibly difficult to deal with, there are positive aspects of it, and I believe it is important to acknowledge those moments to help your emotional wellbeing. For me, the best part is support from allied health professionals who do not get enough admiration. Without my physiotherapist, things would be very different for me. They work tirelessly to treat the person as a whole while going above and beyond to research about a person’s medical history. I honestly cannot thank my physiotherapist enough and without my chronic pain, I would not be able to get an insight on the work these allied health professionals do to help people’s quality of life. The other best part of my chronic pain is educating others about invisible illness and chronic pain. I can see the world and definitely the world of illness from a different perspective than others, to raise awareness and advocate for this community so our voices are heard. I really do know that with chronic pain it isn’t that easy to feel thankful and acknowledge the good days; everyone has hard days and low moments and that is totally OK. If you are experiencing more low or anxious moments than good days, it is also OK to reach out for help. Chronic pain and chronic illness are tough enough.

Katy Baker

The Vicious Cycle of Rare Disease and Mental Health

Rare disease affects approximately 1 in 15 people worldwide, according to the World Health Organization; within this approximately 69% have reported having depression and 82% have reported experiencing anxiety and stress. This is no surprise to me due to both my own experience and some of my friends’ experiences. However, mental health diagnosis due to rare disease is much more complicated than it sounds. My mental health “journey” began in January 2018 when I was experiencing low mood, lack of motivation and some really confusing thoughts. I had visited my GP at University once who recommended counseling. I went to a couple of sessions, but found at the time the structure of those sessions was not right for me because it was not about getting over the problem, it was about acknowledging the thoughts and coping with them. After things hadn’t improved, I went back to my GP who gave me some antidepressant medication. Fast forward to after I told my parents about how I was struggling and on to my third type of antidepressant medication and some difficult times along the way, I am now receiving therapy from someone who I really trust and who is really supportive of me. However, I wanted to write this to show that you are not alone. Below are some of the muddling thoughts I have experienced to remind you that these feelings are totally OK and valid to have. Others are worse off OK we might think that others are worse off and that may be the case, but having low mood or anxiety-provoking thoughts about your illness is totally understandable. You might think others are worse off because you see people post things on social media, they maybe talking about it openly or their illness may be visible but that does not mean that you should ignore how you are feeling. If you feel low or anxious, you have a right to regardless of what other people are going through. Not feeling grateful enough for the good days Good and bad days with illness can really creep up on us and we are not prepared for them a lot of the time. Although it is important to acknowledge what you are grateful for, especially when you are able to do more on one particular day, you should not have to feel like you need to be grateful when your body isn’t performing how you want it to  (just because it is better than the day before when in reality it doesn’t have the ability to do what you want to do compared to if you didn’t have your illness). Lack of research into illness so not knowing what to think A lot of rare diseases do not have much information due to them being so complex. Patients can be left to have irrational and worrying thoughts due to not knowing how the illness is going to impact their day to day lives and also other elements including social events, relationships and employments. If we don’t have this information, how are we meant to make sense and eventually accept our condition? Mental health causing physical symptoms There is a big correlation between physical and mental health, but when our illness causes low mood, stress or anxiety that can them cause other physical symptoms resulting in a vicious cycle. A lot of people then feel guilty for feeling low, stressed or anxious because it has caused physical symptoms contributing to their illness which can then cause more emotional symptoms. You get the picture, the cycle then just goes on and on which can be physically and mentally exhausting. Knowing your illness is incurable This one of course is really tough. All we want is to be well, enjoy life and not be held back by anything. When you are experiencing bad health days, particularly if they are regular or lasting a long time, it can be hard to see light at the end of the tunnel or to feel happy with what you do have in life. Knowing your illness is incurable and that you have got to live your life differently than how you wanted to can be incredibly mentally tough. This is only a nugget of information and only some of the thoughts I have. I am sure many others have experienced these things, but I hope it helps you realize that you are not alone and you deserve support.

Katy Baker

The Vicious Cycle of Rare Disease and Mental Health

Rare disease affects approximately 1 in 15 people worldwide, according to the World Health Organization; within this approximately 69% have reported having depression and 82% have reported experiencing anxiety and stress. This is no surprise to me due to both my own experience and some of my friends’ experiences. However, mental health diagnosis due to rare disease is much more complicated than it sounds. My mental health “journey” began in January 2018 when I was experiencing low mood, lack of motivation and some really confusing thoughts. I had visited my GP at University once who recommended counseling. I went to a couple of sessions, but found at the time the structure of those sessions was not right for me because it was not about getting over the problem, it was about acknowledging the thoughts and coping with them. After things hadn’t improved, I went back to my GP who gave me some antidepressant medication. Fast forward to after I told my parents about how I was struggling and on to my third type of antidepressant medication and some difficult times along the way, I am now receiving therapy from someone who I really trust and who is really supportive of me. However, I wanted to write this to show that you are not alone. Below are some of the muddling thoughts I have experienced to remind you that these feelings are totally OK and valid to have. Others are worse off OK we might think that others are worse off and that may be the case, but having low mood or anxiety-provoking thoughts about your illness is totally understandable. You might think others are worse off because you see people post things on social media, they maybe talking about it openly or their illness may be visible but that does not mean that you should ignore how you are feeling. If you feel low or anxious, you have a right to regardless of what other people are going through. Not feeling grateful enough for the good days Good and bad days with illness can really creep up on us and we are not prepared for them a lot of the time. Although it is important to acknowledge what you are grateful for, especially when you are able to do more on one particular day, you should not have to feel like you need to be grateful when your body isn’t performing how you want it to  (just because it is better than the day before when in reality it doesn’t have the ability to do what you want to do compared to if you didn’t have your illness). Lack of research into illness so not knowing what to think A lot of rare diseases do not have much information due to them being so complex. Patients can be left to have irrational and worrying thoughts due to not knowing how the illness is going to impact their day to day lives and also other elements including social events, relationships and employments. If we don’t have this information, how are we meant to make sense and eventually accept our condition? Mental health causing physical symptoms There is a big correlation between physical and mental health, but when our illness causes low mood, stress or anxiety that can them cause other physical symptoms resulting in a vicious cycle. A lot of people then feel guilty for feeling low, stressed or anxious because it has caused physical symptoms contributing to their illness which can then cause more emotional symptoms. You get the picture, the cycle then just goes on and on which can be physically and mentally exhausting. Knowing your illness is incurable This one of course is really tough. All we want is to be well, enjoy life and not be held back by anything. When you are experiencing bad health days, particularly if they are regular or lasting a long time, it can be hard to see light at the end of the tunnel or to feel happy with what you do have in life. Knowing your illness is incurable and that you have got to live your life differently than how you wanted to can be incredibly mentally tough. This is only a nugget of information and only some of the thoughts I have. I am sure many others have experienced these things, but I hope it helps you realize that you are not alone and you deserve support.

Katy Baker

The Vicious Cycle of Rare Disease and Mental Health

Rare disease affects approximately 1 in 15 people worldwide, according to the World Health Organization; within this approximately 69% have reported having depression and 82% have reported experiencing anxiety and stress. This is no surprise to me due to both my own experience and some of my friends’ experiences. However, mental health diagnosis due to rare disease is much more complicated than it sounds. My mental health “journey” began in January 2018 when I was experiencing low mood, lack of motivation and some really confusing thoughts. I had visited my GP at University once who recommended counseling. I went to a couple of sessions, but found at the time the structure of those sessions was not right for me because it was not about getting over the problem, it was about acknowledging the thoughts and coping with them. After things hadn’t improved, I went back to my GP who gave me some antidepressant medication. Fast forward to after I told my parents about how I was struggling and on to my third type of antidepressant medication and some difficult times along the way, I am now receiving therapy from someone who I really trust and who is really supportive of me. However, I wanted to write this to show that you are not alone. Below are some of the muddling thoughts I have experienced to remind you that these feelings are totally OK and valid to have. Others are worse off OK we might think that others are worse off and that may be the case, but having low mood or anxiety-provoking thoughts about your illness is totally understandable. You might think others are worse off because you see people post things on social media, they maybe talking about it openly or their illness may be visible but that does not mean that you should ignore how you are feeling. If you feel low or anxious, you have a right to regardless of what other people are going through. Not feeling grateful enough for the good days Good and bad days with illness can really creep up on us and we are not prepared for them a lot of the time. Although it is important to acknowledge what you are grateful for, especially when you are able to do more on one particular day, you should not have to feel like you need to be grateful when your body isn’t performing how you want it to  (just because it is better than the day before when in reality it doesn’t have the ability to do what you want to do compared to if you didn’t have your illness). Lack of research into illness so not knowing what to think A lot of rare diseases do not have much information due to them being so complex. Patients can be left to have irrational and worrying thoughts due to not knowing how the illness is going to impact their day to day lives and also other elements including social events, relationships and employments. If we don’t have this information, how are we meant to make sense and eventually accept our condition? Mental health causing physical symptoms There is a big correlation between physical and mental health, but when our illness causes low mood, stress or anxiety that can them cause other physical symptoms resulting in a vicious cycle. A lot of people then feel guilty for feeling low, stressed or anxious because it has caused physical symptoms contributing to their illness which can then cause more emotional symptoms. You get the picture, the cycle then just goes on and on which can be physically and mentally exhausting. Knowing your illness is incurable This one of course is really tough. All we want is to be well, enjoy life and not be held back by anything. When you are experiencing bad health days, particularly if they are regular or lasting a long time, it can be hard to see light at the end of the tunnel or to feel happy with what you do have in life. Knowing your illness is incurable and that you have got to live your life differently than how you wanted to can be incredibly mentally tough. This is only a nugget of information and only some of the thoughts I have. I am sure many others have experienced these things, but I hope it helps you realize that you are not alone and you deserve support.