I have Ehlers-Danlos Syndrome. It’s a genetic disorder that means I produce defective collagen. Collagen is in every part of the body including skin, muscles, tendons, and cartilage. As a result of my defective collagen, my joints are hypermobile meaning that they bend back far beyond where they should. Think of an elastic that is stretched out and has lost all its ability to snap back into place. That is what is happening with my joints. They bend backwards because there is very little to keep them in place. As a result, I am prone to injuries like dislocations or subluxations (partial dislocations where the joint “slips” out of place but goes back in on its own). I have cartilage breakdown in my knees and my right hip and frequent dislocations in my left shoulder and right hip. Subluxations are everywhere, including really weird places like my fingers, ribs, and toes. I am always in pain. EDS sufferers generally invent a new pain scale so my 5 is probably more like a 15/10 on the pain scale and I never experience less than a 5 on my pain scale.
I was recently diagnosed this year, but have lived with it my whole life and started gaining weight around 12 years old as my injuries got worse and the pain associated with EDS got more difficult. I fought for my diagnosis in a medical world that looked at my body weight and decided the reason for all of it was because of that instead of seeing that as a symptom of a much bigger issue.
This past year, I’ve come to realize how big a part my sewing is playing in my life in terms of making fashion more accessible to me. I can, for instance, change a dress pattern to have a right side zipper because of my left shoulder difficulties. Instead of sewing woven clothes with sleeves that are hard for my shoulder to navigate in a dress without stretch, I can sew a sleeveless dress and a coordinating cardigan or blazer. I can sew fuller sleeves with fun elements like gathering at the top as well to make sure the fit isn’t too tight to prevent my arm from getting out of the blazer or cardigan. Recently, I’ve been having a lot of trouble closing bras in the back and need to make changes to my pattern to accommodate a front closure.
In RTW, accessible clothing in my size is often not fashionable and not made in fabrics I would wear. It’s overly large and shapeless. The shoes I buy are often incredibly ugly (I keep pretty shoes for photoshoots and immediately take them off after the pictures!). I need comfort and functionality before fashion and don’t have the spare cash to buy the premium fashionable shoes that are also comfortable. Front closure bras are often made in RTW without wires in my size or they are nursing bras. Options in that respect are next to impossible to find for my size. Going without a bra is also not an option since I find that places too much strain on my back.
Sewing truly does increase my accessibility to the retro inspired fashion I love. I create the fashion for myself and make changes based on what I need. As I get braces to help my limbs stay in place, that will also evolve my sewing and create interesting details in my garments. If I end up needing a wheelchair, I will be able to make clothes with that in mind. In that case, too, I might be able to wear prettier shoes since I am sitting down. 😉
I’m really grateful lately that sewing hasn’t been impeded by my disability, except in terms of energy, but I am trying really hard to not push myself when I am low on energy. Sewing is a lot easier for me than most activities. Except for cutting out patterns, I don’t find it overly physically taxing. I will need to get an adjustable desk for cutting eventually to help me with that plus a real ironing board instead of the desk top one I have so I don’t have to bend over unnecessarily. I tend to cut out patterns all at once and then take the rest of the day off.
As I move reluctantly into fall sewing, I will be choosing patterns with more care due to mobility issues. My mobility issues for the most part will not get better. Once joints begin dislocating there is little that can be done to prevent it entirely. Physiotherapy will help a great deal but some things will lead to surgery or further disability. I’ll share with you my bra refashioning woes. I am not looking forward to the changes I will need to make to my bra pattern for a front closure! Mobility is something that affects my life very deeply and the issues I encounter are so different than an able person. I think very carefully before I do anything and have to consider my energy and pain levels. I’ve been hearing from a lot of other spoonies or people with mobility issues and I think it would be helpful to discuss why I choose certain patterns or how I change certain patterns to adapt to my mobility. Each body is different but sometimes my particular issues match with another person who sews. I’m reluctant to put up a post about wardrobe planning (I never follow my plan!), but this is the type of wardrobe planning I can get behind. In that sense, I will have some planning posts and construction changes and what I have done starting with the front closure for my bra pattern.