The Letter I Sent the Doctor Who Dismissed My Ehlers-Danlos Syndrome
It took a quarter of a century, but a doctor finally broke me down to the point that I sent an actual, “harshly worded letter” after a visit. (Well, as harshly worded as an introverted nerd who wants to be taken seriously can get, anyway.)
Last December, after two and a half decades of worrying and wondering, dismissals by doctors, finally assuming I was just crazy, and pain, so much pain, I was officially diagnosed with Ehlers-Danlos syndrome – hypermobility type. This incident occurred in March at a neurology appointment regarding migraines, numbness and tingling in my extremities, shooting nerve pain, and a few other anomalies. Needless to say, it did not go well. I left the doctor’s office, as I had so many times in the past, feeling hollow and bemused, but this time was different. This time I was armed (yes, armed. Information is power in this game of mystery illnesses) with a diagnosis. This time I knew the doctor was wrong. I knew I couldn’t change what had just happened, but I was hopeful that I could change the doctor’s perception of the next EDSer that he encountered. I posted the letter to my EDS support group, and I was genuinely stunned and humbled by the reactions I received. So many people “wished they’d had the words” or had “totally been there.” One woman even told me she was printing it off to keep in her inspiration journal!
There was never any follow up from the doctor. I didn’t expect that there would be. I just hope it got filed away somewhere inside his mind. Maybe, just maybe it made it into his inspiration journal, and his next “zebra” patient will be better off for it. That’s all I really wanted to accomplish, anyway.
Firstly, I want to thank you so much for your time today, especially in figuring out the Midrin mystery. I appreciate it. I also wanted to express some concerns I had, in hopes that it may help with any other EDS patients that you encounter. EDS is a tricky condition, and even my primary care physician said I will probably know more about it than most doctors I encounter.
I came to you for help with the understanding and treatment of neuromuscular pain, dysautonomia symptoms, as well as migraines and PLMS. You immediately told me that you “don’t treat Ehlers-Danlos syndrome.” Well, that’s part of the problem with patients like myself. We have a syndrome, and a nice collection of comorbidities that we rely on various specialists to help us manage. No one treats EDS, they treat the symptoms and the other conditions that go hand in hand with a systemic connective tissue disorder. One of those comorbidities is often peripheral neuropathy, which can also be genetic, or idiopathic. You told me that you “treat neuropathy,” but you also immediately dismissed the fact that it can be a tagalong with EDS. I will be attaching a link to a review from the Iranian Journal of Neurology on the Neurological Manifestations of EDS. It was one of many that I have found and read. It describes a number of symptoms that I have had for most of my life, and for which I was hoping to find answers today. When someone with EDS comes to you, it is because their diagnoses has finally given them and idea, or a name, or at least a clue about something that has been causing them suffering their entire life, and not because they are, as you said, “on a fishing expedition,” or “looking to pile on the medication.” I am sure that you think comments like these are harmless toss offs, but they’re not. They are dismissive, and hurtful.
I mentioned to you that I have been wading through this process for 25 years. For 24 of those, I didn’t have a solid diagnosis. As I told you, I was called crazy, or a medication grubber, despite the fact that I have never been on or asked for pain meds, as indicated by my chart. I have run the gamut with doctors, good, bad, and indifferent, and I have never written to any of them before. What changed? My diagnosis.
As awful, humiliating, and demoralizing as it has been in the past receiving those reactions, I could, at the very least, understand the consternation when it came to a patient with anomalous pain, and unspecified rheumatological issues. I imagine that is a frustrating situation for doctors as well as patients. How can you treat a mystery? But I came to you with a diagnosis in hand. I came to you seeking help regarding the neurological components and symptoms of that diagnosis, and you dismissed me the second that I said, “Ehlers-Danlos syndrome.” You even suggested that what I am dealing with is fibromyalgia, which sounded like dismissive doctor code for what effectively amounts to a shoulder shrug. Fibro can be a comorbidity of EDS, but not mine. It is not my diagnosis. I did, however, mention another diagnosis of periodic leg movement during sleep (PLMS), and you, again, dismissed me telling me, “it’s nothing to worry about.” Disrupted sleep, flailing limbs (sometimes during the day), twitching so hard that I hit the wall at night… Nothing to worry about?
My general practitioner (who is a woman, by the way — you only referred to her using male pronouns) has been very supportive in this process. I don’t expect every physician I meet to be likewise, but until there is a place where doctors of different specialties come together and take an interdisciplinary approach to conditions such as mine, we rely on specialists like you to guide us. After 25 years of this, I know the signs. I watched the moment when you checked out. I know when continuing to ask questions has become pointless. I have no doubt you are an excellent doctor. Your bio was impressive (yes, I actually read about you before I came in.) But if you treat every patient who comes in with EDS, fibromyalgia, chronic fatigue syndrome, dysautonomia or PLMS the way that you treated me, then your Hippocratic Oath should be called into question. You caused harm today.
Upon dismissing me, you stated, terribly ironically, “you’re on your own.” You have no idea how true that feels for people with conditions like mine. We are alone. We don’t have a designated clinic, specialist, place to land, or place where the doctors all believe and understand us. The only advocate we had in Nashville left for Ohio last winter, so we now rely on a network of doctors to believe us, work with us, and help our suffering so that we can lead a better quality of life. I hope that by writing this, I help you see your next EDS patient as someone alone on a raft and looking for guidance, and not just someone easily dismissed hypochondriac on a “fishing expedition.” Please, help them. Or, at the very least, give them the benefit of the doubt.
Thank you for your help with finding an effective migraine medication. It will make a huge difference, I hope.
We want to hear your story. Become a Mighty contributor here.