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.
Andie Wells Studio 
Hi Andie, thank you for your honesty in openly acknowledging your disability issues. I have some of the issues you have and some that are different, while I’m sad that you have to suffer so much it is good not to feel so isolated as I usually do. I’ve been making more clothes for myself as my body changes shape and I have more issues accessing clothes. Like you for many years the medical profession saw my weight not the underlying reasons. Now it’s going (along with my height) they’re confused because in their book loss of weight = less pain. In my book loss of weight = dramatically increased pain grrr.
Look forward to tips on how to adjust my clothes and would really value tips on making front closure bras, Gave up underwired ones years ago because of pain, maybe I can try again following your suggestions.
Thanks so much. When I lost 60 lbs a few years ago, my right hip started dislocating! So I know that feeling when you think something is a solution, but it becomes a problem. 😦 For me, it was because the weight loss was from high-impact cardio and yoga. Just about the worst thing a person with EDS could do to themselves. Combined with that, my diet was too low in calories without enough protein. Losing weight again in the future may come but not like that. Swimming, an exercise bike, and pilates are my best methods. In terms of diet, I am not restricting it in any way just doing portion control. 🙂
I hope my adjustments and journey help! 😀
Andie your beautiful whatever your size, it’s what shines out of the body that matters not what the housing looks like. Though I know it does help when we feel good about ourselves 🙂
I’ve just got an Ikea butchers block kitchen trolley, I thought for the kitchen – but it is fantastic for my sewing!
My machine sits on top and I use the baskets and draw to hold the bits I’m working on 🙂 I’ve recently lost height again and my feet don’t reach the floor from any of my chairs if I sit back in them 😦 but with my kitchen trolley I can rest one foot on the base while I’m working. I’ve attached a piece of wood (old chopping board that’s .5 A4 size) with hinges and the foot pedal for the machine sits on this!
I’m going to try and get wood (fixed with piano hinge) on the back to make a cutting table.
My flat has very little space so this is ideal and I can push it to wherever I need it! Thinking of getting another one if I can find the space for it, they are just so useful!
I use an electric wheelchair too, I asked for worst case scenario of my condition before I bought it. It fully reclines, goes 1′ up in the air, great in shops for top shelf, I even help able bodied shoppers reach stuff! Can finally hang out my own washing with this too 🙂
Being a sewer also means I’ve been able to make my own bags/panniers for it – not yuk medical colours
I’ve made my own waterproof cover (adapted a tent) as the ones you can buy cost way more than I could afford – mine was £15
Made my own cold weather cover up as what is sold needs two people or more flexibility than I have!
Super soft throws make fabulous lightweight coats for people who can’t take weight on their skin*
If anyone wants help on the above items email me on talespinnerwordweaver@gmail.com my ideas (except this one *) are my own and not adaptations of other peoples.
Andie keep being the great inspiration that you are, so glad I found your blog
Lucy-Caitlyn England
Lucy all those ideas are just fabulous! Maybe we can collaborate on some posts in the future to speak to things like this? We’ll chat through email, but you’ve got me so excited. I am waiting on seeing the next specialist, but I do think having a wheelchair would help me. Last night I could barely walk, my right knee locked in place and then my right hip wanted to dislocate but we needed to get to from point a to point b. I had to suffer and go slow. I’m starting to think that I really should have one to avoid moments like this. 😦
❤ I'm so glad you found my blog, too. I always look forward to your comments. 😀
Hi Andie. Every time that someone shares their complications in their day to day life, it helps so many others. Thank you for that. On a sewing point, I wish we lived close. I love to make adjustments and cutting out patterns, and you love to sew. We’d make a great team! Take care and listen to your body. No one knows it better than you.
Hi Karen. Thanks so much. I wish we lived closer, too. Although I do like making pattern adjustments, I hate cutting stuff out and would just rather sew. Also, I love sewing for others so we would make a good pair. 😀
Hi Andie
Excellent blog post. Everything I wear is governed by my EDS or by the secondary issues I have as a result. RTW begins and ends in semi fitted jersey T-shirts and funky cotton men’s pyjama pants that look too cool for wearing in bed! To go into the considerations and difficulties I have would be a blog post on its own and I don’t want to hijack your post! All people who have physical differences need different types of clothes, fits, fabrics, fastenings… It all needs taking into consideration, sadly it is down to individuals making stuff for themselves/ others. In the last 2 or 3 years I have seen people start to blog items for those with different needs, mostly kids and I hope the sharing continues as we can’t all afford the specially made stuff or we live in different countries so postage is an obstacle. Shoes… Until I started using a chair I wore boots or trainers. I can now at least wear pretty shoes with a dress, not that I wear a dress that often but to have the option is fantastic.
Having worked in a special school I’ve seen many types of clothing problem and some pretty ingenious solutions some of which inspired solutions for me and in turn I shared things too. Now I’m hoping to be well enough to help make clothes for a baby who has a tracheotomy and can’t have clothes over her head. Luckily baby clothes are small so the limited time I get to make will mean more progress that adult clothes.
Your sewing room may be the biggest challenge but by far the most useful and most good for you in the long run. I recommend ironing board that adjusts to many heights, seated to tall. They have 3 or more positions for the legs to lock in to. New they are expensive but keep an eye for garage sales and the like as the older ones (say 20 years plus) are more likely to adjust to multiple heights. They may be heavier but I found this is better, they are more stable and allow a little more weight to be put though them when pressing down on them, also less likely to fly over if you lose balance. I can sit and iron with mine. I acquired it 20 years ago and all it took was new ferrules, a lick of metal paint that contained rust inhibitor and a new pad and cover. She’s still going strong despite probably being as old as me! A good chair that has support, padding and let’s you sit in a position at your machine with good posture is a must too, keep essential tools nearby, if table space is at a premium then have a rolling tote or a bag or box by the chair. I do things in sections too. Trace pattern one day, cut fabric the next time. Sew in sections and keep notes on what you’ve done in case there is an unexpected long break between sewing sessions. Old tables can be raised on blocks if you need more height or when buying a cutting table new act out what you do in the store on the table. You will look ridiculous but it’s best to get it right.
Anything you are prepared to share Andie will help so many people with all different kinds of disabilities. It’ll also help those who want to keep in mind different needs when they design too- I wonder how many beginner sewers don’t realise a zip can be replaced for buttons or put in a different side and a discussion on how this is done would be so helpful for people.
Your openness about your EDS and your passion for sewing are both very inspiring. You take care, keep pacing, keep looking after yourself. Sending big stripey hugs across the Atlantic to you,
T x
Hi T! Thanks for all the tips about the sewing room. I’m definitely going to find a sturdy ironing board. I cannot have it collapse under me. Good idea on the adjustable part. Sitting down and ironing would be good for super low energy days. I need a new cutting table (mine is just a plastic top folding table and on its last legs…har har) so I am getting an adjustable height one from ikea this fall. I can’t wait!
All your sewing pursuits for kids with disabilities is so admirable. I love sewing kids clothing and love the idea of sewing more accessible clothing for them as well. I bet that many kids would encounter the same issues as me. I think I will look into that in my area and see what I can do in that respect. Very inspiring!
So many hugs to you, T! ❤ ❤
Hi Andie, thank you for your blog. I’ve been lurking here for a long time and admiring your creations I also have some issues with disability and clothing. I’ve been researching front closing bras lately and there is very little in retail stores and what’s there is so ugly. I’m going to try altering the underwire bras I have by putting a large bathing suit G type closure in the front. I could still use the back closure for changing the band size. I think inserting hook and eye tape would be too difficult in a bra already made. I’m looking forward to reading your ideas on front closing bras. You are a brave and inspirational woman.
Hi Susan! Thanks so much for all your kind words! 🙂 I plan on using the G-type hook. That’s a good idea putting in the back closure as well for band size adjustment! It just occurred to me that maybe I could change it to a right side closure, too. Hmmm. I need to sketch out some ideas, but you’ve got me thinking. Thanks so much! ❤
Hey Andie, while I don’t have EDS, I have also found some genetic issues that have caused my weight and illnesses. Thank goodness we now have some validation with all the new genetic findings! I’m still hoping I can loose some weight…it makes life so much easier.
I second the old ironing board. My mother in law gave me her and she probably bought it in the ’60’s. My son saw an old book that suggested practicing swimming the front crawl by laying on an ironing board….. But my ironing board was NOT that strong. It took me a few years, but I found another one from the 50’s that is even better! I have it set up on the lowest setting along side my sewing table.
My sewing room is an old U shaped office desk, one side is cutting etc and the other holds my sewing machine. Sergers are on the bottom of the U that is easy to pull out. The cubbies are full of sewing stuff. I could go on and on I love it so much! With a roller chair, I never have to get up.
On bras….I pull mine on and off over my head like a t shirt.
I love your style and love reading every one of your posts.
Xoxo
Thanks, Judy. I hope I can lose some weight, but I am not going to make it an issue. I am focused very much on feeling healthy no matter my size and doing what I can. I think swimming will help. I’m dragging my feet on that, though. I need swimwear and am procrastinating making it and signing up for the YMCA. 😦 I’ll get over it, though!
Great tips on the ironing board! I will check my local thrift store. Your sewing space sounds amazing and incredibly accessible! I’m somewhat jealous! 🙂
Thanks so much for sharing. It is really helpful to see the changes you make that might be of use to some others of us.
Thanks, Maggie! I can’t wait to share some of the changes. 🙂
What a great read, Andie. I suffer from CFS/ME (among other things) and though our disabilities have lots of differences, we also have lots in common in terms of what we need from clothing.
Getting dressed and planning clothes to wear in the morning can be agonising as I have to balance my love of fashion with how my body feels on the day. Like you, I have found that sewing can help in terms of adding more movement ease to clothing, as I find my muscles fatigue very easily if they are constantly fighting against tight woven fabric (like a narrow back/sleeves). Instead of having a right zipper, I always choose a very long CB zip so I can basically step in and out of clothing instead of risking passing out by putting my arms above my head. And I, too, am very sad that I can no longer wear all my beautiful shoes as my leg muscles are too weak to fight against any kind of resistance. Where are all the pretty orthopaedic shoes?!?!
I’m sorry your mobility will not improve, and that you will have to incorporate further accomodations in your life. If you do end up considering a wheelchair, feel free to ask me any questions as I purchased one a while back and it dramatically improved my life (though I am lucky not to need to much now). Much love
Thanks, Siobhan. When you have any sort of chronic illness, there has to be a consideration of how it impacts clothing choices. There was a tip suggested here of putting in snaps instead of a zipper. I like that, too. I definitely like shirt dresses for the fact that they are just a bunch of buttons. 🙂 Although, my fingers are getting worse to control, but sewing does help exercise them.
We need to start demanding nice fashionable orthopedic shoes! lol
I’m glad to hear you don’t need your wheelchair as much now! I will have to move from my house if it comes to me needing one. Sadly our house is the least accessible place. It’s a three-story townhouse with a basement and has stairs everywhere. On days I am having trouble managing, I have to stay in my room with my bathroom on the same floor and make only a couple trips downstairs for food. If I get to that point, I’ll definitely ask for advice. ❤
Thank you so much for sharing your health issues here. It’s amazing that I’ve never thought too much about accessibility and clothing – I have just always made what I can be comfortable in and what is easy to get on or off. Also clothes that go with my limited shoe choice (I have a permanent and painful back injury and also extremely dodgy (official medical term lol) feet.
I can’t sit at the sewing machine for too long due to the back pain, but I manage it well and don’t get to stressed when I can’t do it, or need to go for a long walk instead. I tend to wear skirts and tops more than dresses mainly because I have a fear of not being able to reach for the zipper or pull the dress over my head.
I’m looking forward to seeing how you go with making some clothing more accessible and therefore comfortable and wearable!
Hi Michelle, I had the same concerns with zips and pulling dresses over my head.
I never make dresses with zips in now, instead I use poppers, velcro or very small magnets.
I’ve never had anything suddenly open and create blushing 🙂
Thanks, Michelle. I also tend to wear more skirts and tops than dresses. They are much easier to get in and out of. I’m considering making dresses with ties or snaps on the straps. Not to step out of necessarily but to prevent my arms from catching on anything. We’ll see. Right now, pulling stuff over my head is still manageable. I like that idea of snaps on the side, though, because zippers are a bit fiddly! 🙂
This is a fantastic idea. I’m looking forward to reading more about this. It’s overlooked in the SBC as a whole and I’m glad you’ll be filling part of that void.
Thanks, Andrea. I completely agree. I did some research, but found very little information on accessibility and sewing. There are people creating more accessible sewing machines, which may also become a topic for discussion when I shop for a new machine in the new year. In terms of sewing for more accessible garments, though, there are few things on it. Surprising since so many people in my online support groups mention they sew.
I wouldn’t be surprised if there were people who tried but didn’t get any traction because the result wasn’t magazine-pretty.
I agree.
Fabric Pens can be used on light suede/canvas shoes to personalise them. Also the outliner that is used for glass painting is something I use, I use my fabric pens inside this. A famous/infamous internet trader has these pens on sale at the moment 🙂 Also great if you have monochrome fabric and want to change the look.
This is such a great post, Andie. It occurs to me that I have occasionally seen bloggers who mention making changes in their sewing for what are essentially accessibility concerns, even if they don’t name them as such–fit adjustments for physical disabilities and mobility issues, having to adjust or negotiate the sewing process because of limited mobility or fatigue, adjusting patterns or construction to better suit people with sensory issues, etc. But to explicitly name it as sewing for accessibility, as you’ve done here, seems so important and helpful–not just because it makes it easier for others with similar concerns to find resources and advice, but because it helps make visible some of the otherwise invisible obstacles that many people deal with.
I love that you and a handful of other bloggers have recently started talking about sewing while chronically ill and/or disabled. I agree with Andrea that issues of accessibility have been overlooked in the SBC and it would be great if there were more discussion/awareness about it. There is already lots of discussion about body diversity in the SBC, sewing for real life, and using sewing as a creative outlet during difficult times–accessibility, illness, and disability are important to all of those discussions! And it would be great if there were more tutorials for making some of the adjustments you describe. Wouldn’t it be cool if, rather than repeating over and over again the same kinds of basic skills that have been thoroughly demonstrated online, bloggers/designers running sew-alongs and such enriched their content with advice and demonstrations of how to alter patterns for different mobility concerns, etc.? It just seems like the more the SBC challenges the assumption of a normative body (slim, young, healthy, able, etc.), the more it will be enriched by diverse participants and perspectives.
Thanks so much, Anna. You worded that so well. Do you mind if I quote from your comment in a later post?
I would definitely like to see those kinds of tutorials and pattern adjustments offered. Tutorials for FBAs and other common adjustments are ubiquitous in the SBC. Certainly we don’t need more of those. Something that considered a less able body would be really good to see. ❤ If I have to do that myself for now, I will, but I hope to inspire others to write about it, too.
I don’t mind at all–quote away!
This all makes me think of part of my teacher training and my research in disability studies, where one of the big arguments is that creating accessible classrooms doesn’t mean waiting around for students to come to you with requests for accommodations. True accessibility requires proactively assuming that you will have students with disabilities in your classroom and routinely looking for adjustments that you can make to your course design and daily class management that will make the space more open to many different kinds of bodies and different kinds of abilities. These little adjustments–anticipating issues with the physical space of the class, varying the kinds of in-class activities and assignments, making sure all content meets accessibility standards, revising overly rigid policies, talking openly about your interest in making the class accessible–don’t just benefit students who would be eligible for formal accommodations. They also benefit students who haven’t been diagnosed, students who are hesitant to disclose disabilities, students who find themselves temporarily disabled, and students who simply have different learning styles.
That’s all to say that there are probably lots of little things that SBC could be doing to be more considerate of diverse bodies with varying levels of ability, including offering different kinds of tutorials than the same set of frequent adjustments we see over and over again. And those little considerations stand to benefit a lot of people in ways we might not even be able to anticipate.
Thanks, Anna. Such a great perspective. 🙂 I really appreciate hearing it from a teaching perspective as well. I’ll be sure to credit you and link to your blog when I do quote from this. Thanks for the input! ❤
Andie sent an email in reply to your comments 🙂
lots of love, Andie!! I can so relate to “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.”. I finally got an actual diagnosis for my endocrine problem last winter, but at the same time the doctor is telling me that I’m fat due to my enocrine system basically not functioning, she is telling me i need to loose weight! Its like, hello, do you not hear yourself? I am SO OVER the typical medical approach!! I better not get started…
I’m so over that approach too! I got the exact same advice. Although, she did say it in a different way in that she knows it will be difficult, but at the same time…. how? She did have good suggestions on PT-guided exercises, swimming, and pilates. No yoga! I’m not sure why doctors can’t think beyond these typical responses. Give me actual solutions and I can take that much better.
This is a great post, Andie! As I am setting up my sewing space here in the new house (or at least planning how I will set it up) I am giving more and more consideration to accessibility within the space. I am considering if standing and sewing may be better for me than sitting, or at least having a height adjustable surface so that if I feel better standing I can, or vice versa. I haven’t given much consideration to how the things I wear may be affecting me. This gives me some things to really take in to consideration.
I have my first appointment with my new doctor next Friday. It will be interesting to see how that goes. If she tells me I need to just lose weight, I may just lose my mind.
I think having the option to be standing or sitting while sewing would be great. I might have to try that. I’ll be getting the adjustable desk for cutting, but I could easily use it for sewing as well. Great idea. I can’t wait to see your new sewing room. Your new house/property looks amazing. ❤ ❤
With my current GP, when I made the appointment request (it was all done online in a fully electronic system), I put in information on having been overlooked because of my weight and my concerns going forward. So when I had my appointment with him, he understood my position. I discussed it with him further and explained that I understand all the complications that weight adds, but that I want to discover the cause of the weight gain first. I also went over my history of lose and gain and how my pain and joint subluxations got worse whenever increased activity was involved. Be very honest. It helps to write down your history. Don't be afraid to drop her and find another if she gives you any attitude. ❤ Good luck! I know how anxiety-inducing the quest for a new doctor can be.
I would definitely love to read a SWAP regarding this issue. So interesting and important! And one of those things that RTW (and pattern companies) just forget to even think about. Do your homework, clothing manufacturers/pattern makers!
I don’t have chronic issues in the same way (I have a bung shoulder and a dodgy back but I would consider them mild issues) but I found having a dedicated cutting table at the right height to be massively massively helpful. It means I can sew for longer, and be more careful cutting etc because I don’t get tired and in pain so my concentration stays longer.
I mean to say, btw that I found the P4P bikini top a bit of a struggle to get in to – I mentioned this in my blog post but not sure if you read it. It might depend on your bust to underbust ration – mine is quite large and so there was a bit of struggling to get it on, I think if my joints were prone to dislocation I’d be worried about that. Something to look out for?
Yes, a cutting table at the right height is high on my purchase list. I’m planning on getting an adjustable one so I can still use it for the times I need to make pattern adjustments.
I’m not planning on making the bikini top just yet, but I was thinking I would need to have to convert it to a front closure. It could probably be achieved easily. I was also looking at Greenstyle Creations Endurance sports bra as a possibility as well.
Oh I hadn’t seen that endurance sports bra! That looks very cool. It might have to go on my ‘to sew’ list.
I definitely think you could convert the P4P one to a front closure relatively easily. It’s such a simple shape and construction – no unnecessary fiddly bits to negotiate when making changes.
I love your attitude and creative approach. I have EDS too, and I also find that thinking creatively to find adaptions is a wonderful thing 🙂
I’m really sorry about the delay with my reply. I’ve been pretty sick the past few weeks. Thanks for your message. 🙂 I really think being creative helps a lot. ❤
No problem 🙂 Hope you’re feeling much better now.
Thanks. I’m getting better. Still really weak but getting my strength back. Hope you are well! 🙂
Inspiring!