My Battle With Behcets

Being chronically ill with an invisible illness has all but guaranteed my experience of medical gaslighting. Being a medical student, a paying member of the medical community, did not seem to mitigate my risk of mistreatment by my colleagues while I would hold the role of ‘patient.’ You would think that maybe an eye roll or look of annoyance might be avoided given my position in the medical hierarchy. If anything, being a medical student gave some providers leverage by sole justification for my symptoms to be functional. “You are a medical student, you must be stressed and anxious! You must also think you have every diagnosis you’re learning about. Obviously!” They would assume they knew my lived experience as a medical student, labeling me as the “anxious, type A” personality, while simultaneously pathologizing it. I would go to the doctor with my symptoms and not know if I should reveal my medical training background, for fear of being told my symptoms are merely figments of my imagination brought to life by way of conversion disorder. I knew something was wrong, but labs and imaging tests weren’t helping me figure it out. I was being pushed aside by doctors for my symptoms being functional, psychosomatic, or simply made-up. I was trying to diagnose myself for the longest time. I felt like no one was on my side. Everyone was trying to “prove” to me that what I was experiencing was not real, at least in the way that I was living it. It was my own fault that medicine wasn’t yet able to explain my syndrome, when it should have been the responsibility of medicine to come up with an explanation rather than place blame.

I buried myself in school and ignored my symptoms after my first hospital admission and discharge, when I was told the first time that my symptoms were the result of functional issues- functional neurologic disorder, namely. My wrist drop and calf weakness was all in my head. The sensory changes? Not possibly a small fiber neuropathy, definitely just in my head. No reason to do more testing. The headache? Probably a migraine. The hospital told me that I was picking my skin to create ulcerations; the skin lesions that covered my body were a result of an anxious habit. My stomach pain was from functional constipation and IBS with nausea. There wasn’t anything clearly wrong with my belly on labs or the CT scan. My acute kidney injury? Oh, I just wasn’t staying hydrated because my stomach hurt and I was nauseous, obviously. I spent 3 days being treated like a pincushion and was terrified of what I was experiencing, just to have the doctors who I had looked up to with such respect tell me that because of my “psychiatric history” of depression and PTSD, and without clear explanation for my symptoms, this “episode” was clearly psychogenic. They stopped the steroids and methotrexate which had, to me, clearly helped. They sent me home without answers but had successfully made me feel at fault for everything. I knew there was more to my mystery illness, and yet I found myself questioning everything I experienced, asking myself if it was real. This was the first time I had experienced medical gaslighting to such degree, and unfortunately it was not an isolated incident.

I thought that once I had a diagnosis, the gaslighting would stop. Boy was I wrong. My rheumatologist left the state, so I was forced to find someone new. This was 10 months after being diagnosed with Behcets by this rheumatologist, who was amazing and never made me feel invalidated. I had to see a new doctor, a fellow rheumatologist, who should’ve been a red flag based on my prior professional relationship with him. I literally worked with this man for 2 weeks on a clinical rotation. I knew how he treated patients. He was cold and dismissive when a patient did not match the textbook presentation he was looking for. Newsflash, patients don’t read textbooks. I certainly did not match a textbook, although I did match clinical criteria for behcets disease. But I decided to trust this doctor. I saw him for an hour appointment, and he asked me a lot of questions about pain and fatigue. He didn’t ask questions specific to my disease. His physical exam was terrible. But he told me at the end of the appointment, “you’re on good medicines for your behcets. Lets continue them and start tapering you off steroids.” Fine, that was fine. I left. I got a notification on my phone 3 days later when he wrote the note for my appointment, and I literally started crying. The tone in his assessment was condescending and rude. He assessed me with having “fibromyalgia,” when he never actually told me he was diagnosing me with this (because I would’ve told him right then and there why I don’t have fibromyalgia). I have functional issues and psychiatric issues and not anything inflammatory, apparently. He wanted to taper off steroids to try and elicit a response in my disease, to prove the presence of an autoimmune disease. As I tapered off steroids, things started getting bad. I reached out to this rheumatologist, and the responses were slow and also extremely unhelpful. I started to decline. I eventually got admitted again for acute kidney injury (who knows why) and fever of unknown source. I also had an oral ulcer and genital ulcers at the time, too. Inpatient doctors didn’t treat me much better. I was dismissed after my heart rate spiked in the 140s laying in bed and wouldn’t come down even with beta blockers. Low grade fevers were documented but no infection was found. And so the steroids were continued to be decreased and I was sent home.

There have been more cases of medical gaslighting and just failures in the healthcare system throughout my journey. I have gotten better at advocating for myself because if I don’t, scary things had been missed. Like pulmonary embolisms and a DVT weren’t discovered until 3 days into an admission, when I had been coughing up blood the entire time. And that same admission I was told my massive pneumothorax that required emergent chest tube placement was just ‘anxiety’ by the nurse and was offered hydroxyzine, an antihistamine, for my severe shortness of breath. Obviously it was “just anxiety” that led to my sudden requirement of supplemental oxygen.

There are just too many instances. I share because there are so many people suffering from invisible illnesses and chronic diseases. There are so many people who suffer medical gaslighting and as a result, have their care be significantly compromised. Medical gaslighting kills people. When I see patients with diagnoses or problems that more commonly lead to medical gaslighting situations, I try so hard to make sure they at least feel heard. I do not ever want to dismiss a patient for something that medicine just doesn’t have a great understanding of yet. It is up to medicine to find the answers, and it’s the fault of modern medicine limitations when answers are hard to find. But its up to medical providers to figure out those answers, someday. Every day. research brings medicine closer to understanding complexities of chronic diseases. And I think that’s pretty cool.