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One Simple Act You Can Do to Help Me Manage Ehlers-Danlos Syndrome

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Most people have never heard of Ehlers-Danlos syndrome (EDS). Most people don’t know what it does to the body, and can’t even begin to imagine how it feels.

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

I know a lot about EDS, but there are still times when I can’t imagine what my EDS friends are going through because it affects us all differently. The pain I get from a partially dislocated hip could be totally different to the pain my friend gets from the same partial dislocation.

I’ve found that as EDS is not well known, many people simply don’t know what to think or expect. This in itself is fine. I don’t mind you not understanding my condition, heck, a lot of medical professionals don’t understand it, EDS is complicated! I don’t mind you asking about it. But I absolutely mind if you don’t respect me and my condition.

People assume the pain really isn’t all that bad, after all, unless I’m wearing braces or using crutches it isn’t always visible. I don’t always look sick. So, how could I expect someone to understand how much I hurt if I just look like everyone else in the room? You can’t see my stomach contracting very hard, my heart beating double the speed of yours, my blood pressure dropping too low as I move, or the crushing migraines every day. You can’t see my joints slipping and my ligaments over stretching. But it hurts, whether you can see it or not, it hurts.

You can help me manage my illness with one simple act. Acknowledge me. Acknowledge my pain, even if you can’t see it. I try not to talk about my pain to anyone else other than my family. But if I tell you something hurts, it’s because it does. Let me know you understand I’m in pain, maybe offer me a seat, a warm drink, even a hug!

Pain grinds you down. Daily, intense pain wears you out and is hard to manage.

It’s even harder to manage when the person your talking to doesn’t believe you, or simply doesn’t acknowledge it. I don’t want your sympathy, that’s not why I’ve said it. But often, I need prompting, and reminding of what helps me when I’m hurting. Sometimes I can’t remember what to do to help myself.

If I tell you I hurt, please acknowledge it, I want you to know how I feel, so we can walk a bit slower, have a rest, and give you some insight into how I feel.

A rare condition is so hard to manage. Medical professionals don’t always know how to help. Medications don’t always work. Treatments aren’t always straight forward. Sometimes, unfortunately people don’t always take you seriously, and don’t always understand enough to believe you. Your acknowledgement is vital, because if the people I trust enough to tell I am in pain don’t let me know they understand I’m hurting, then the people I don’t know so well like medical professionals are even harder to speak to.

Thinkstock photo by Grandfailure

Originally published: March 6, 2017
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