Editor’s note: Now that TNT month is over, we’ll be posting a few “Who We Are” posts while we start planning in the background for February’s theme month! We’ll announce the theme in early January!
We asked the community to share their experiences of being a sewist living with pain, chronic illness, or health concerns. I wrote about my own experience of chronic pain back in 2013 in this post. and I even filmed some of the physiothereapy exercises that helped me!
Here’s what the community had to say on the topic:
Dee (who is @sbooriel on Instagram) says:
I come from a maker family but I only started sewing my own clothes in my twenties. I had plenty of energy at the time and was doing lots of other things too. Over time things, that previously I didn’t think twice about, started to become more and more stressful. It happened so slowly that I didn’t really notice my social circle narrowing and the fact I always wanted a quiet night in. I started wondering how everyone around me got so much done. I struggled to complete even small tasks like renewing insurance. I thought I was just lazy. It was only when my physical health deteriorated that I realised something was wrong. It took many years to get to the bottom of it.
I had hyperparathyroidism ( http://www.parathyroid.com/parathyroid-symptoms.htm), which is massively underdiagnosed. At its worst, I didn’t leave the house. Sewing was therapy for me — a chance to focus on something other than how I was feeling. The online community was a way to feel part of a community when I couldn’t do face-to-face interaction. When I did get dressed, wearing me-made gave me something to boost my confidence.
The illness affected the way I tackled projects. Symptoms include fatigue, an inability to focus and raised cortisol levels, which give an heightened sense of stress. I frequently started working on a garment and stopped as soon as I hit a problem — even just rethreading the machine could cause me to give up and go and lie down. Forget stash levels — my UFOs levels are astronomical! However, I think this taught me some valuable lessons. Firstly, don’t beat yourself up — just because other sewists can churn out garments in a few hours doesn’t mean you have to. It’s okay to grieve over the fact that you can’t do the things you used to do, but try to rejoice in what you can. Break tasks down in to very small chunks, e.g., get the right thread, wind a bobbin, sort the right needle, and focus on each one at a time. Every journey starts with a single step, every garment starts with a single stitch.
Physically, I had to deal with poor body temperature control and fluctuating measurements. (I feel like there must be so many sewists with the same issue and I’m sure there is a whole blog post just about that.) I still have quite a difference in waist size throughout the day/week/month so I have developed various styles and hacks to make my clothes fit. I always aim for secret pyjamas. If I can cycle to work, it can look smart for a meeting and I’m not desperate to rip it off as soon as I get home — that’s a winning garment. My body can be uncomfortable all by itself — I don’t need clothes to add to the problem.
I’m one of the lucky ones. I had an operation two years ago and it transformed my life. My health is the best it’s been for years and my sewing output has increased exponentially. I wouldn’t change what I went through though. It’s made me much more understanding of people with mental health issues and/or chronic illness. I know that for many people simply getting through their day is the equivalent of running a marathon for the rest of us.
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Trish (aka. @floralsflannels on Instagram) says:
My name is Trish Green and I fall into that third category… I’m 28 years old and I have psoriatic arthritis, an autoimmune inflammatory disease. I was only recently diagnosed, but the issue started when I was in high school (common). On good days I am completely mobile just as anyone else is! On bad days, my sacroilliac joint is so inflamed it takes me a half hour just to walk to the bathroom in the morning! My mobility is seriously hindered and I’m in a lot of pain. My disease presents itself mostly when I’m stressed or have been too sedentary… Exercise is key! Unfortunately it’s hard to control stressors. It’s been a tough year health-wise with so many wonderful things like a new job, getting married, a honeymoon, a new house… Unfortunately my body doesn’t always respond well, even though it’s been incredibly exciting!
I don’t change my plans to suit my disease. I try to live a normal life and take medication when needed so that I can participate to my fullest (like canyoning on my honeymoon!)
Sewing is a great outlet for me. I have projects cut out ahead of time, so that when I stop working I have something to do (instead of:… Just one more email!). Also, I move around a lot from cutting to sewing to ironing to pinning — although it’s not exercise, it stops me from just sitting in one spot for 3 hours when binge watching Gilmore Girls :). Lastly, sewing is a great stress reliever, something that makes me feel creative, accomplished and fuels my passion. I’m convinced this contributes to my health too!
I am legally blind and this definitely affects my sewing. My limited vision is in only my left eye. The lens in my right eye was removed. I was born with cataracts and developed secondary cataracts later on. My childhood was full of eye doctor appointments, surgeries, and uncomfortable glasses. Today, I choose to only wear reading glasses when I need them and navigate my world through what limited vision I have. When I sew, I use a lot of touch. I feel my stitches compared to the edge to check seam allowances and top sticking. As a result, my stitch lines have never been perfect, so I’ve started using invisible thread and love how my projects turn out now. I used to toss out nearly 60% because of how visible the lines seemed and I knew the fully sighted could tell much more than I could. It takes me longer than usual to complete a project. I even took some fashion design courses at a local college and earned my certificate.
Hi Sewcialists! My name is Andie and I blog at Sew Pretty in Pink. I am very open about my illness on my blog and often write about it. In 2015, I was diagnosed with a rare genetic disorder called Ehlers-Danlos Syndrome (EDS). I produce defective collagen meaning that my connective tissue is defective. All my joints are hypermobile (they go beyond the normal range of motion). I have chronic pain in most areas of my body, joint subluxation and dislocation, cartilage damage in my hip and knees, and widespread tendinitis. Because your connective tissue is everywhere in your body, EDS is multi-systemic and can cause issues for organs, skin, hair, and many other parts of your body. I currently have migraines, lung issues and am being tested for GI issues and allergies. About the only area that isn’t affected by my defective collagen is my bones, but joint dislocation can often cause bone degeneration or breakage so that area is at risk as well. My risk for injury and illness is much higher than an able bodied person and because of this I am unable to do a lot of things. I have an invisible disability at the moment and can walk, but this may not always be the case.
For a healthy person, reading that list can be overwhelming. I have dealt with this my entire life to some degree and have learned how to maintain a positive spirit in the face of large obstacles. Sewing is one of my coping mechanisms as well as a way of creating a more accessible wardrobe for myself. I can create a dress with a zipper that opens where I need it to so I don’t have to ask for assistance or cause a dislocation in my shoulder. I can make clothes that don’t bind my ribs and cause them to slip out of place. I can create a wardrobe that fits what I need when I need it and, since my needs can change very quickly, it is important for my wardrobe to be able to accommodate that. Sewing also helps me cope and focus on days I can’t leave the house due to illness, depending on what area is affected that day. Additionally, sewing helps me feel confident about and comfortable in my body. I can make fun outfits that look great on me and are accessible.
When chronic pain or other illnesses make it impossible for me to sew, the sewing community is a great way to maintain connection and keep positive on the bad days. Chronic illness can be incredibly isolating and cause depression and anxiety. By maintaining online relationships, a person with chronic illness can keep connected and feel like a part of the world. And sewcialists are the best for that! It also helps me to not always be focused on my illness. I can talk endlessly about sewing with my online sewing friends. It really helps me get through the bad days and on good days too. Thanks, sewcialists!
And here’s my own story!
I was going to tell you about how I developed tendonitis in my wrists and elbows 10 years ago, and how I had to sleep in braces and limit my hobbies for years… and how it still affects me daily today. But since I first drafted this post, I’ve had another chronic pain issue take over my life: sciatic nerve pain!
It turns out that years of commuting to a job where I sit all day at a table meant for children, leaning forward as students read with me, takes a toll. I’m getting compression on the nerves in the back of my legs from sitting, which gives me lasting numbness and pain, and led to lower back pain too. It’s a reminder that we can’t take our bodies for granted.
In comparison with the other people sharing their stories here, I’m struck that I let myself develop not one but two repetitive stress injuries. Both caught me entirely off guard – there were one or two warning signs that I thought I had time to correct, then BAM! It became a more serious issue overnight. So if I can tell you anything: please take those warning signs seriously! If your wrists hurt from knitting, your back hurts from cutting out fabric on the floor, or whatever your issue is, stop for a break and look for a long-term solution!
Share your stories, questions and comments below!
OMGoodness – sounds so much like me. I love sewing and creating. It’s not only my body and physical limitations–it’s also a mental/emotional limitation factored in. I get overwhelmed over what used to be so simple for me. My primary care doctor is referring me to specialists but in the meantime I am making baby steps like you mentioned to get back to one of the few creative activities that brings me joy.
I”m glad this resonated with you! It’s lonely to feel like the only one dealing with hardship, and I hope it helps to ,know that you are not alone! <3
Sewing is a physical activity which we often forget about – we think of it as a creative, mentally challenging and productive/rewarding activity but it’s also physical as all the contributors remind of here in this post. I exercise regularly which helps my aging body stay strong and flexible (I’m 63) but I also have cataracts in both eyes (I’ve always been extremely myopic anyway but that’s always been easily corrected) but these cataracts create a sort of fog over everything that’s really annoying when sewing especially when sewing black. Forget black. I won’t even buy black fabric because I know I won’t be able to see that black thread on black fabric 🙂 Even navy can’t be too dark (and navy is one of my go-to colours). I have lots of needle threaders, lights and magnifying glasses handy. The joy of sewing however remain untainted (same with reading!).
My sister had cataract surgery in both eyes, and she’s gone from legally blind to able to handle lace knitting once again! She did a picture mock-up on the computer once of what things looked like before the surgery it is was quite shocking to me how “normal” she managed to seem while actually being quite visually impaired!
Does it help at all to get fancy bright lights? I’ve seen some neat lighting options out there!
This was a wonderful read. Between my Fibromyalgia and my PhD I spend a lot of time trying not to fight my body and learning to cope with my anxiety and depression. A PhD is a seemingly endless project with few attainable small goals. But sewing reminds me that I can actually finish something. And because I don’t have to be terribly mobile to do it, I can sew on days when the pain won’t let me write or go to the library. Even the famous fibro brain fog can’t keep me from sewing a few straight lines on a pillow case or a skirt. Sewing makes me feel confident and capable, and as so many of the wonderful women in this post mentioned, when I do feel up to leaving the house I can do so wearing something I made with my own two crabby, swollen hands. I am proud to be a sewist. It makes me feel proud to be me.
[I also feel secretly proud that during my worst flare up ever I managed to make my own gorgeous wedding dress and looked like a damn princess]
I”m so glad you enjoyed the post! I’m quite amazed at what the human body can push through when the soul just wants to SEW!!! (I’m in total awe that you made your wedding dress, let alone while sick!!!!)
This was a great read, thank you for your contributions. I have a chronic illness and it’s really amazing the things we take for granted when we are able bodied. Craft keeps me going, but there have been long stretches of time where I couldn’t do anything but lie in bed and exist (barely), or even when I was upright did not have the strength to work a sewing machine. I remember one day attempting to knit two rows and it left me bedbound for the rest of the day, and suffering the effects for a few good weeks.
So I’m unendingly grateful for the ability to craft now, and am so glad to read craft has had a positive impact on the lives of others with chronic illnesses. But even when I couldn’t create, the online sewing community was a big support in getting me through each day, and that’s another aspect of crafting which has been essential to my life with chronic illness.
Thank you for sharing, Siobhan! I’m glad that the sewing community has cheered you up even when you can’t physically craft yourself. I”m glad to head you are in good shape now and able to craft, at least a bit! <3
Thank you all for sharing your situations and struggles. It just goes to show that you can NOT tell what someone has going on inside by what they look like on the outside. Bless you and well wishes on accomplishing what you feel is important in your lives!
My husband has a chronic illness, which he doesn’t like to talk (“complain”) about, so I confess I use the stories of others with chronic issues to remind myself of what he’s going through. It helps me be a better and more compassionate person—-and to appreciate my own healthy body. So I want to thank all the posters for sharing.
Also , I confess I’m really struck by Susie-Marie’s account of sewing while visually impaired. I’ve encountered quite a few older people who used to love sewing but lost their sight and stopped, and it made me very sad—-so I’m so excited to hear how someone IS able to accommodate sewing without seeing.!
Thanks to everyone for sharing their experiences. Reading this brought back memories. When I was a child I was mysteriously ill for months—the best guess the doctors had was Chronic Fatigue, which was only just starting to be an acceptable diagnosis at the time. When I eventually started back at school I just did mornings, then walked a short distance to an elderly friend of my parents and spent the afternoon resting and crafting. I have always believed that those afternoons sewing and crafting were really important to my recovery.
And more recently, one of the reasons I got into dressmaking was because the hours I spent each day crocheting and hand sewing were starting to give me RSI in my shoulders. I’m pleased I heeded the warning signs and found another way to craft that didn’t put that same stress on my upper body. There’s inherently more variety of movement when dressmaking so I don’t seem to get the same problems. My shoulder definitely still lets me know if I’ve been doing too much knitting, though!
I’ve had a few visits to ‘hand therapy’ for some remedial and preventative work to do with my thumbs/hands. Had a brace to sleep in, massage/ultrasound/stretches and rest. I bought new ergo scissors for cutting fabric, they are great! At the moment I am much better but supposed to be doing hand putty exercises for strengthening. Only needs to be 5-10 minutes a day, but I keep forgetting……
Loved these stories! One of my early sewing mentors was an aunt who owned a sewing shop “Easy on Togs” where she designed clothing for folks with mobility issues. Seeing some of her creations was one of my “eye opening” moments that showed me the power of sewing your own clothes – one of them being that you can, indeed, have clothing that take your physical needs into account.
When Dee wrote, “My body can be uncomfortable all by itself — I don’t need clothes to add to the problem” I cheered. Why on earth should our clothes add to our physical discomforts? Words to live/sew by, for sure!
In March this year, after initially being diagnosed with pulled back muscles, I lost the person I used to be, when I eventually was diagnosed with severe osteoporosis with multiple fractures of T12 , L1,2,3,4 and 5 vertebra and a slipped disc. It was like falling in to the darkest of tunnels whilst living every day with chronic pain!
Then I found a small pinhead of light, which has grown and grown, not only sparking an old interest but that also gave me back some positivity.
That light was the sewing community , the vloggers and bloggers , their successes the permission to have failures! Thank god for the internet – well may be not- I have built my stash with on line ordering from my bed, inspired by the hope that in a few months, I can not only continue to indulge in the virtual world of sewing but can also get back to putting into practice all the wonderful tips and ideas I have picked up along this slow road to some degree of recovery!
Keep up the good work one and all ! It’s the best tonic!
Inflammatory Bowel Disease (Crohn’s) checking in!
I have what I thought were a unique set of needs when it comes to the clothes I make, but it sounds like other people share them too: quick to get out of – especially the bottoms, and pieces that are comfortable and look good though a wide range of waist measurements (I can vary up to 4-5 inches on a bad day). I’d love to wear more dresses, but I usually have a feeding tube in the wall of my abdomen, so separates are a better choice to be able to access it when needed.
I’m really looking forward to seeing more from the community about how they meet their needs.
I wonder if there is a way of adapting a wrap dress or similar to create a panel for access that doesn’t require you undoing the whole dress. Maybe a panelled mid section where two of the panels have zips at the side or buttons? You could even make it a design feature. The blog The Mom Edit helped design a dress that is cleverly cut to drape and turn into a top or skirt and I wonder if there is a way of cutting and draping that allows you to drape one way or release a bit more fabric to release more size at the waist if needed (I’m thinking cleverly arranged poppers).
That’s definitely something to think about! I’ve got a TNT princess seamed top that could be made up into a dress pretty easily – I think it should play well with closures in the seams. Thanks for the suggestion!
Oh I’m glad it gave you ideas. I just thought, you could also consider a top with straight sides with hidden vents in the side that opens into a more trapeze style when you undo poppers. Even make it a design feature with contrasting fabric for the vent fabric. I guess you could just wear a trapeze top to start with but it might make having to expand a waistband suddenly as fun rather than something to hate or be embarrassed about. There’s a woman at work who has flashing lights on her wheelchair wheels like kids have on bikes and I like that she’s turning something bad into something fun. Good luck!
Very late to the party here, but I just heard about this post! I’m not fully diagnosed – I’ve been sickly since childhood, but got much sicker about 5 years ago (in my early 30s). The docs think it’s autoimmune (big surprise) but I was mostly dismissed until this past spring when I found some better doctors who’ve been more persistent in trying to get to the bottom of things. Like Kay, I have osteoporosis, as well as severe GI issues, fatigue, joint pain, and a long list of other issues. I have been off work for 5.5 years now (gulp) and had to stop knitting because of joint pain, so I really got into sewing again because it was easier on the hands and started to do garment sewing for the first time and fell in love with it! I can only do a bit here and there because my fatigue is so severe, but it’s been an absolute lifesaver, and also led to my partner and I starting a website/community for sewists. That part has been really challenging but also incredibly rewarding, seeing where slow but persistent progress can get over time. Life in the slow lane, we still get there…eventually. 🙂 Probably my favourite thing about sewing aside from the sewing itself has been meeting so many other chronically ill and disabled sewists (and knitters) – I’ve never felt so much like I’d found “my people”, and it’s been a real gift.
[…] far in the series, we’ve explored age, height, health, being an LGTBQ sewist and intersectionality. You can find the whole series […]
I’ve been reading sewing blogs for years, labeling myself as a “lurker”, rarely leaving comments. Your comments touched me deeply, as did most of the writings at this site. I’m retired, and was diagnosed with chronic Lyme disease a few months ago. The doctor figures I’ve had it for about 10 years now, including the last two years I struggled through full time working. I completely identify with the physical pain, the depression and progressive isolating that comes with a chronic disease. Thank you for sharing and giving me the comfort of knowing that there are many others out there who understand.
You are definitely not alone! Are you on Instagram? There’s a new community growing there called @chronicallysewn which is bringing together sewists with physical and mental health issues. It’s really lovely to see people working around their challenges! I’m glad you found us here too, and you are enjoying our posts! The sewing community is such a great place!