I have practiced medicine for two decades. Throughout my career, I’ve tried to support those suffering from ME/CFS, long COVID, and various chronic conditions that the medical field often neglects. However, I’ve also had moments of doubt, questioning if patients were overstating their symptoms or if their issues stemmed from something else entirely. I honestly don’t know how many times I failed to screen for ME/CFS or mistakenly advised exercise to someone with PEM simply because I wasn’t looking for it. I’ve definitely erred—misdiagnosing, under-diagnosing, and even judging patients when I felt overwhelmed by my own inability to help during repeated visits. Twenty years in this field taught me the importance of believing the patient. I’ve spent years trusting that they are the experts on their own bodies, and I take pride in that. I’ve learned to be a strong advocate for these individuals, a trait I inherited from my mother, who taught me to care for the marginalized. Then, I personally fell ill with long COVID, dysautonomia, and ME/CFS. I ignored my own symptoms, overexerted myself, and followed poor advice when better options weren’t available. I’m still learning; I’m just a flawed human being.
What prompted this post was a colleague’s recent social media rant about POTS. The response was immediate and chilling. The sheer absence of compassion and the refusal to help these patients was shocking. They mocked patients’ looks, their disability claims when they didn’t “look” sick, and their attempts to find answers via Google or TikTok. It was all judgment and no curiosity. I felt ashamed to share a profession with them. I tried to educate them through replies until my cognitive fatigue became too much. A few other physicians with these conditions spoke out against the ignorance. I also noticed a handful of empathetic doctors who aren’t sick themselves, though they were rare. I replied to those few with tears in my eyes, thanking them for acknowledging the reality of these illnesses.
I am sorry. I recognize your struggle and I believe you. Your pain is valid. I’ll keep fighting for you with whatever strength I have left.
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Please use social media to raise awareness. We need more voices like yours. Some physicians have a god complex. I was mocked just because they haven’t read the latest research. They clearly won’t listen to an average person like me.
Oh Doctor, I wish you were my physician! You seem like such a kind soul. I’m rooting for your health and recovery! If only more medical professionals shared your perspective!
This might sound silly, but your words actually made me cry.
I appreciate you speaking out. Everyone makes mistakes; nobody is perfect. The important thing is improving once you gain new insight, which is what you’re doing here. I’m sorry you’re also dealing with Long Covid. It has completely disrupted our lives, and the exhaustion and frustration are overwhelming. Your advocacy means a lot to us. Thank you.
Doctors have labeled me as both a drug seeker and someone who refuses medication. I’ve been told I’m too unattractive or too attractive to be ill. I’ve been dismissed for being both too ignorant and too informed. Now, I’m facing a horrific end. I can feel my mind deteriorating while I’m still aware. I just hope whatever comes after this is more merciful than this life has been.
I’m not sure why there’s such a lack of belief in patients; perhaps it’s because people aren’t always great at explaining their history. Having been a medical transcriptionist for 25 years, I’ve heard the condescension in doctors’ voices. Recently, an ENT acknowledged my long covid, which was a huge relief. However, when I saw a GP for iron deficiency symptoms, he dismissively asked why I was even there because my labs looked “normal.” Doctors often ignore you if your results are within range, even if they aren’t optimal. I’ve started bringing my husband to every visit because they only seem to take my symptoms seriously when he confirms how sick I’ve been. It’s sad that I need a witness to be believed despite my own detailed notes. Thank you for your words, and I hope you find wellness.
I’m a physician as well. I came down with ME during medical school, right before the pandemic started. I’m currently in remission and am teaching myself how to care for this patient population. There is such a massive demand for help. Feel free to reach out.
Reading this brought me a lot of peace and comfort. Thank you. I truly hope your health improves. We’re in this together.
Are you familiar with the organization https://doctorswith.me? Sadly, many in medicine won’t listen to patients, but they might listen to a fellow doctor describing the experience. Your voice is vital.
It baffles me when doctors think we’re faking. Do they really think I’d spend my time fighting insurance, finding specialists, and missing work just for fun? I’d much rather be relaxing on a beach. While rare cases of attention-seeking exist, for most of us, the effort of being “sick” doesn’t make sense if it weren’t real. Medical professionals need to accept that many things remain undiagnosed because we lack the right tests. They are human and can overlook things. I just want my condition to be respected, especially since it’s so new.
I recently saw a discussion among residents about how to avoid patients with EDS, MCAS, or POTS, or how to dump them on psychiatry. It’s appalling. As a longtime nurse, I’ve never seen such blatant disrespect until after the pandemic. Two years into my own long haul, I have severe medical PTSD. I’ve told my family I’d feel safer in a cell than a doctor’s office. I’ve stopped going because so few care to learn about these issues. I was treated like a psych patient when I was at my worst. This forum is the only reason I figured out my histamine problems. The community here has been more helpful than any “expert.” It’s a tragedy.