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To the Person Walking Out of the Doctor's Office Feeling Hopeless About Your Rare Disease

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Today I walked out of a doctor’s appointment feeling utterly crushed. I am not ashamed to admit that the meltdown that ensued due to this appointment began before I even left the office. Today I had a doctor tell me that nothing is wrong. Hearing that nothing is wrong when something is wrong is the worst nightmare for those of us that live with chronic pain. Yet, this is a very common occurrence in the world of invisible illnesses. I think the problem boils down to doctors not knowing about rare conditions.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

The first thing the doctor said to me today was that he knew nothing about Ehlers-Danlos syndrome, which was the first sign of trouble. I continued on with the appointment hoping it would become better, but instead it became worse. After X-rays he came into the room to tell me nothing was wrong and pointed to my neck. The problem was that he was pointing to the wrong spot on the X-ray during his speech about my impeccable flexion and extension. I was crushed after the assessment. I knew that by him saying nothing was wrong it would mean living longer with extreme instability in my neck.

I had a revelation after that appointment, though. I now believe that I cannot blame the doctor for what happened. It is not his fault he was never educated on Ehlers-Danlos syndrome or associated conditions. After these bad appointments occur, those of us living in chronic pain will feel despaired, but I think we should accept that it is often not the doctor’s fault they do not know your condition. All roads lead back to awareness for rare diseases. If we don’t speak out and advocate for ourselves, no one ever will. Without those of us writing, researching and spreading the word about our conditions, there would be no doctors out there with any knowledge of our conditions.

This is exactly why I encourage people to write for The Mighty every day. If everyone can spread some awareness in some way, our children may not have to deal with the same ignorant doctors we dealt with. Of course, there will always be rarities of doctors who do know about rare diseases, but these are few and far between. The road to these doctors is bumpy and often hopeless, but I believe we can help prevent future generations from having to travel the same roads. Next time you feel hopeless after a bad doctor’s appointment, remember these two things: greater awareness could help prevent this in the future, and there will always be more doctors.

Best of luck to anyone traveling the same path of ignorant doctors. I believe we can all find relief eventually. All we need is time. Time for research. Time for awareness. Time for knowledgable doctors.

Originally published: August 12, 2016
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