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5 Things I Want Doctors to Know When Treating My Invisible Illness

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I am 20 and I have Ehlers-Danlos syndrome (EDS) hypermobile type, along with various other health conditions. I was diagnosed last year. EDS leaves me in chronic pain and unable to do the things I would like. EDS leaves me needing lots of medical input.

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

While I appreciate all the medical input I have received over the years, not every encounter has been useful. These five things are what I would like health care professionals to know when treating me:

1. To a doctor who has glanced over my notes, I may seem like a bit of a hypochondriac. I wouldn’t blame you for thinking that. But I am not. My condition means that all of my body is affected — 99 percent of the time when I have stated I think there is something wrong with me, there has been something wrong with me. Please believe me when I come to you because I wouldn’t be asking for your help if I didn’t think I needed it. I know my body better than anyone else does.  I do not want to be at the hospital late at night. I don’t want to spend hours waiting in stuffy waiting rooms. I would much rather be at home curled up on the sofa with my dog and cat. I would not be asking for your medical help if I didn’t think I needed it. Please treat me as I treat you — as a human.

2. Please realize that I am in pain, and I am scared. While I may not be able to articulate exactly what is going on and how I am feeling, I can assure you that I am experiencing distressing symptoms. Please don’t write off how I feel because I can’t score my pain on a pain scale anymore. I have lived with chronic pain for so long that often my daily pain levels can reach a seven or eight. This is average for me. This is not unusual. This makes it hard to score my pain levels for you, but this doesn’t make the pain any less. I am in pain, and I am asking for your help.

3. Please understand I don’t expect you to know everything. I don’t expect you to be able to fix me right away, and I don’t expect you to have all the answers. What I would like is for you to do the best you can do, and to ask your colleagues for help if you need it. You don’t have to be some magical being that can instantly fix me, you just have to listen to me. I know you’ve been taught that rare things are rare, and that they don’t happen to people. But they do happen. Just because it’s rare doesn’t mean it isn’t real.

4. Please understand that just because I have been in and out of hospitals and have been for a long time, this doesn’t make it any easier for me. Receiving diagnoses after diagnoses is hard. Please don’t be alarmed if I become emotional after being told something else is wrong with me. It’s not a reaction to you. It’s a reaction to myself. It’s a reaction to feeling like whatever I do, my health always seems to decline. It’s a reaction to being told again that there is something wrong with me. But I assure you, I won’t let this beat me.

5. Please know that I appreciate all the help and treatment I have had from you. I know I am not a straightforward patient. I know I take up your time. But I am thankful you are treating me. I am thankful you are there to help me, even if you don’t know right away exactly what you can do to help. I appreciate your work and your input. I appreciate you trying to make me better.

Originally published: May 9, 2016
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