EDS Awareness Month Day 2

 Day 2 – What You See, What You Don’t

EDS and HSD can affect many areas of the body, often at the same time!

Here we are, day 2 of Eds Awareness month

EDS is for the most part an invisible illness. No one sees the body parts dislocating as the day goes on. They don't see the pain we endure every time we have to put something back in place or a subluxation happens. For our non- Chronic friends, a subluxation is when a bone comes partially out of place but returns on its own usually almost as fast as it came out. It happens quickly like a pop then gone. Oftentimes pain lingers in the area it happened. For me, this happens all over the body many, many times a day. Some aches and pains last days, some weeks, and some months. There are even parts that just hurt daily and you try your best to just deal with it. 

Sometimes you will see people using braces to hold themselves together and many of us use mobility aids including but not limited to Canes, walkers, rollators, manual or electric wheelchairs. All mobility devices are valid and are used to help make living with EDS just a little more bearable. 

If you wonder to yourself “Do they really need to use that?” YES! Yes, they do. 

We are more self-conscious than you will ever know. We only use them when we need them so one day you may see me out and about in only my custom-made orthotics. I wear Afo’s (ankle foot orthosis) and Who’s (wrist, hand orthosis.) Some days I use my forearm rollator to help with balance and the distance I can walk. It also has a seat that helps with the co-morbid Pots where standing can be an issue. Some days I use my electric wheelchair. I can not walk for long periods without great pain and exhaustion. Sometimes I just can't feel my feet to walk. 

Zebras tend to only go out on their better days if they have a choice in the matter. You often won't see them on days with extreme fatigue, pain, or other debilitating symptoms.

How about you? 

What do you have to deal with that people don't see? Describe or visualize what people may see on the surface, but what they don’t often see you going through. ⁠

I see you.

I hear you…

And I am so glad you are here! 

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