One Simple Act You Can Do to Help Me Manage Ehlers-Danlos Syndrome
Most people have never heard of Ehlers-Danlos syndrome (EDS). Most people donât know what it does to the body, and canât 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 canât 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.
Iâve found that as EDS is not well known, many people simply donât know what to think or expect. This in itself is fine. I donât mind you not understanding my condition, heck, a lot of medical professionals donât understand it, EDS is complicated! I donât mind you asking about it. But I absolutely mind if you donât respect me and my condition.
People assume the pain really isnât all that bad, after all, unless Iâm wearing braces or using crutches it isnât always visible. I donât 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 canât 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 canât 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 canât see it. I try not to talk about my pain to anyone else other than my family. But if I tell you something hurts, itâs because it does. Let me know you understand Iâm 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.
Itâs even harder to manage when the person your talking to doesnât believe you, or simply doesnât acknowledge it. I donât want your sympathy, thatâs not why Iâve said it. But often, I need prompting, and reminding of what helps me when Iâm hurting. Sometimes I canât 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 donât always know how to help. Medications donât always work. Treatments arenât always straight forward. Sometimes, unfortunately people donât always take you seriously, and donât always understand enough to believe you. Your acknowledgement is vital, because if the people I trust enough to tell I am in pain donât let me know they understand Iâm hurting, then the people I donât know so well like medical professionals are even harder to speak to.
Thinkstock photo by Grandfailure
J lives in England with her assistance dog, feisty cat and tropical fish. She enjoys writing and would like to be able to raise awareness for invisible illnesses. âA disease may be rare, but hope should not be.â
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