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When a Doctor Finally Said My Chronic Illness Was Real

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Ever since I was young, I have wanted to be successful. This notion continued to evolve as I finally made it into a clinical psychology doctoral program. In my late 20s to early 30s I had my first debilitating break of illness. I have now been labeled with a slew of diagnoses, but they all reduce to their debilitating components: Sometimes I cannot stand, sometimes I cannot walk, sometimes I cannot think clearly, sometimes I have debilitating fatigue, sometimes I faint, sometimes I suffer through tremendous pain, and I have no sophisticated way of knowing when any of these phantoms will make their presence known.

My illness was debilitating and uncalled for. I was unable to work at my unpaid internship at a revered hospital for about six weeks. I had been halted while striving for success. I thought I was unstoppable, but a wave of illness was slowly removing the keystones of my dream. I frantically searched for answers. No one understands what you are going through until you can label it. A single word to tie my life neatly into a palatable package was nowhere to be found. I threw out some hypotheses for what had happened and chalked it up to the stress of graduate school. With several weeks of bed rest and an indomitable spirit, I was able to return and finish out the year.

I had seemingly recovered from this spell and began living each day to the fullest. I became class president, worked part-time, produced a small play and was out socializing more often than I was home. I felt alive, filled with purpose and content. I lived my life to the fullest. I never had a full day off, but I felt it was better to keep my momentum high in order to not fall into the trap of debilitating fatigue. However, I began to notice that at any chance I could take, I would sleep for the entire day. My friends normalized this. I wanted to believe them, but their reasoning did not fit with what my body was telling me.

One year later and the mysterious illness was back. It started with excessive fatigue and immense pain. I had to explain to everyone in my life the odd paradox of wanting to get out of bed but not being physically able. This was difficult for anyone who had seen my constant scurry of activity to believe. I kept falling every time I stood up and I could not explain why. When I went to my primary care physician, I was diagnosed with depression and possibly fibromyalgia and chronic fatigue. At the time, these diagnoses were the catch-all terms for symptoms that could not be verified through medical studies.

I have always believed in the healing power of psychotherapy and my therapist believed my narrative. She encouraged me to keep searching because in her opinion there was more to my story than what I was being told. I had a good relationship with a psychiatrist who had been working with me since the first spell of illness struck. I asked him if he would write a letter, reporting that I had fibromyalgia and chronic fatigue (as this was what my primary physician diagnosed) as documentation for accommodations at school. Knowing me as well as he did, he denied my request. I was stunned. He believed I had a connective tissue disorder and referred me to a geneticist who was an expert in these disorders. He only knew this because he had another patient who had been diagnosed with a connective tissue disorder and my symptoms paralleled hers.

As the activities in my life that defined me slowly faded into the background and I took medical leave yet again, I lay in my bed desperately praying and hoping I would find answers, treatment and a cure. Geneticists are busy people but fatefully, someone had cancelled and I could be seen in a couple days. My geneticist confirmed the presence of a connective tissue disorder. He reassured me that everything I was experiencing was real, not in my head and that it needed to be treated. The treatment was trial and error because my condition is rare, but he knew enough to make educated treatment recommendations that were mostly helpful.

Since getting that diagnosis and having my struggle validated, I have been able to put my experience into words. I have been able to find people who are fighting the same battle. Having the language and the diagnosis enabled me to communicate my experience to clinicians and supervisors effectively. I am grateful for my diagnosis, but it occurred out of luck or fate and I often think about my fellow comrades who are suffering without the words, knowledge, and presence of a clinician who was comfortable believing rare diseases happen and they can be debilitating to even the most motivated people.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to 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.

Originally published: March 29, 2016
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