Today, I’m having a flare up and decided to post about what it’s like to live with an invisible disability, especially as someone who values their independence.
Many people don’t know the first thing about this so a basic explanation is that my connective tissue is fucked. I am hyper-flexible in every joint, and often dislocate joints without realizing it. This causes me to have daily pain although normally its just a constant achyness instead of pain, which I have learned to ignore most days. However, it also gives you incredibly soft skin, in fact its referred to as “velvety soft” skin, and I believe it also contributes to my great skin and hair growth, so benefits?!
Back to the point, most days I can ignore the pain and work and do all the usual day to day jobs. Sometimes this isn’t the case, I can’t speak for others but mine seems to ebb and flow. Some days, I almost feel normal just with achy and stiff joints, and other days I am at my max and even sleeping aggregates the pain.
Yes sleep can actually make my pain worse. Growing up I was a stomach sleeper, its like a constant hug, but as I got older I started tossing and turning because of my EDS. Both shoulders hurt, but I can normally sleep on one side for about 2 hours and then switch. However, my knees usually start to hurt soon after and then I get some pain in my lower back so I try to sleep on my back, which never works because I can’t sleep on my back, then I move to my stomach but then my shoulders begin to hurt from being hunched, so then I use two pillows to move my shoulders back, and it just continues until my alarm goes off.
Basically, no matter what I have to accept some pain. Right now I am sitting in a recliner chair with the massage function going on, I have a Hades on my lap, my comfy Aztec blanket, and my vape pen I should be good. But I can still feel the pain in my fingers, wrist, my shoulders are achy but I can only hold them back for so long before my mid back begins to seize up, then my lower back is just some stabbing pain, my hips are mad they have to be used to sit, and I forgot to bring a pillow for my knees to rest on.
So yeah, life is rough but the problem is that even I think that because I look fine I should be fine. Sometimes, I wear braces to give me support or use my cane but then I think that I am playing things up too much.
I guess it boils down to I don’t know how to act as a person with a disability. Everyday is rough and a struggle, but I can’t focus on the bad so I choose to focus on the good. I am also overly excitable, which I usually regret the next day. I have lots of energy, which makes me having a disability worse because I hate to miss out on things. So I push myself until I literally can’t any more, and this is why I use cannabis.
I find that smoking forces me to take things easy and rest, it also is one of the only thing that works. It doesn’t just magically take away my pain so I can get to work or be of any use. It just numbs things, and then I get high and then I can only focus on one things and so my pain just gets muted.
The other benefit of weed, is that I don’t feel constantly judged and don’t second guess everything, so I actually ask for help. This is something that I suck at, because my entire life I strived to be independent and fix my own problems. EDS has forced me to ask and accept help, but I still struggle with it daily. Kyle my wonderful husband and partner for 7 years has been by my side since I was diagnosed. He has seen me at my worse, and I literally had to debate myself to see if I should ask him to pull out cash when he was at the store so I could buy more weed. It took me five minutes to convince myself that it wouldn’t be a bother to him, this man has literally carried me many times when my ankle or knee gave out. He has helped lower me into a bathtub so I can soak in some bath salts, he has dealt with my high ass in a wheel chair at the airport and had to get us on the flight with me thinking I was on a real life roller coaster.
I am still learning that there is no one way to act, and I am going to try and be more lenient with myself. If you are struggling with these issues, just know that you aren’t alone and that asking for help is a sign of strength, not weakness.