When I Feel Like an Imposter as Someone With a Rare Chronic Illness

One morning a month ago, I woke up with a cough and chest pain. When I pushed the covers off my sore body, the once-soft sheets grated against my aching skin, a clear sign I had an infection. Whenever my skin hurts, I always know it means a trip to the doctor’s office is in the cards, and a round of antibiotics is probably necessary. I called out of work for the day, and at 9 a.m., I called the doctor’s office. Two hours later, the doctor was agreeing with me: yes, it is an infection; yes, you should be on antibiotics; go home, get some rest, you’ll be better in a few days.

Back home with a doctor’s note and a box of clarithromycin, I stared at the thick, yellow tablet and debated whether I should take it. Why did I suddenly feel like I was faking it?

This scene is all too common for me. Whenever I am sick, I begin to ask myself if it is all in my head. Why? Clearly, with a rare disease diagnosis, I have been vindicated. I am not faking it. I’ve never been faking it. My immune system is half of what it should be; of course I am sick. But my mind still distrusts itself and my body.

Imposter syndrome is defined as “an experience of feeling incompetent and having deceived others of one’s abilities.” A strong characteristic is the “propensity to shame.” The classic version of imposter syndrome you’ve probably heard of is one in which the person in question feels like an imposter in a successful environment, as if they have not earned the success that they have. In my case, I have found many people with chronic illness or rare diseases, especially those diagnosed in adulthood, tend to doubt their own diagnoses and feelings of illness.

I believe a lot of my feelings of being a chronic-illness imposter come from the fact that I was diagnosed at 21, meaning I went through 21 years of doctors telling me I was fine when I didn’t feel fine (and as I now know, I was definitely not fine). I had doctors tell me, “It’s all in your head,” when I was having trouble breathing, or when I could feel my heart beating way too fast. Luckily, all of those problems have now been addressed; I no longer have tachycardia thanks to an ablation procedure, and I take an inhaler daily for my breathing troubles, though I have been given conflicting answers as to why I struggle to breathe. Twenty-one years of being told, “it’s all in your head” or “it’s probably just depression” can force you to doubt yourself whenever you are unwell, even if a doctor later confirms your original self-diagnosis.

To correct for their feelings of being an imposter, some patients bring their partner with them to the doctor to confirm that their issues are real and not simply in their head. Unfortunately, some patients still suffer and do not to bring up their current issues for fear of being dismissed. I still call my mother when I can’t decide if I should see the doctor or not, and she validates my feelings of concern and grounds me in reality. The best we can do is insist on being checked out, even if we aren’t sure if the problem is in our head.

If you have a doctor who constantly tells you an issue is in your head, talk to other patients or your support system and see what they think. They will likely tell you that the problem is not in your head, they will ground you in reality, and hopefully they will help you find a doctor who is willing to help you. If any doctors are reading, please make note of the damage that can be done by telling a patient “it’s all in your head.” I was passed around to over 10 specialists before finally being given my diagnosis, 21 years after the onset of symptoms. Twenty-one years of being told it was in my head, being made out to be a faker and being sick is too long. The effects of those 21 years still linger, but luckily, I’ve got good people on my side now.

I’ve heard from others that friends and co-workers will sometimes doubt or write off your symptoms as not-that-bad. Do you think these additional voices telling you that you’re being melodramatic add to the feeling of being an imposter? Have you had similar experiences?