8 Ways Imposter Syndrome Shows Up in Life With 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.