Medical PTSD and People With Ehlers-Danlos Syndrome

I have lived with plain old PTSD for over 12 years. I am familiar with the panic attacks, the dissociation and the avoidance. I have made my peace with it for the most part – I know that the dissociation, however impractical, is there to protect me when things get too overwhelming, and for the most part I am now in control of my triggers. Of course I would rather not have it at all, but compared to a few years ago, the effects on my day-to-day life are minimal. I mention this because it’s from direct experience that I can say those same feelings and reactions are now linked with a new trigger for me. That trigger is medicine.

Something as small as going to the GP now sends me into overdrive. I am fearful that I will get the reactions that are so common for patients with EDS — the doubt, being looked at like it’s all “in your head” and being talked over by a doctor who refuses to listen. When I go to the doctor, I know it is a million times more likely I will be told that none of my conditions exist, or they are far too rare for someone like me to have, than for a doctor to actually accept that I am ill. They will sit and talk over my head to the person with me rather then make eye contact and discuss things with the 30-year-old woman in front of them. I am made to feel sub-human. I am made to feel “stupid,” attention-seeking and small. Worse still, I am now so disheartened that I spent over a year sitting with new and worsening symptoms without seeking further help.

This systemic neglect can cut deep into the mind of someone with a rare or chronic illness. It seems outrageous to belittle a patient to the extent that they no longer feel safe seeking medical care, but it appears to be a very common occurrence. I know so many others who now avoid medical intervention completely. We simply don’t have the energy to keep fighting anymore.

Recently I had to change GP surgery. It took four years of neglected referrals and wasted appointments to push me to a point where I had no choice. The reason for my reluctance to change was simple: there was no guarantee a new doctor would be any better, and I couldn’t face the idea of going through everything again, getting my hopes up and then being shot down once more. The more this happens, the worse it feels. I may have been strong once upon a time, but these days I have no energy left to withstand another onslaught.

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