Published: 29/06/2020

The toll that my EDS takes on my body and my identity

I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) when my youngest child was seen and diagnosed.

I wasn’t sure if I should be excited to finally know why! But I was scared for us both. I bruise easily, will be 50 in several weeks, and live in constant pain of some degree. My hip and shoulder moves too far and sublux weekly. I have memory loss, mobility problems, daily fatigue, depression, and anxiety. My depression can get severe depending on pain levels, energy levels, and opinions from others.

I can’t stand in one spot or end up with severe lower back pain. I have short term memory loss (extremely stressful), I can’t sit for longer than 15 minutes at a time; after 20 minutes I get stiff, 30+ minutes I get extremely stiff. These body parts are affected in some way: neck, left shoulder, both wrists, and hands, lower back, left hip, both knees, shins, head, and feet.

There are days I just cry because I am so tired of living with constant pain. I get tired of others telling me to ‘cheer up’, ‘it could be worse’, or saying there is ‘no way I have that much pain’. Another one is, ‘if you really had everything you say, you would have gotten approved for disability. Need money? Get a job!’ There’s that aspect too!

Slowly I’m losing my identity. As my body deteriorates and breaks down and weakens I am no longer able to do a number of things. I have learned not to think too much, especially about what you can’t do! EDS is not something I would wish on anyone.

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