Who We Are: Living with Pain or Chronic Illness

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!

Who We Are (7)

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:

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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.

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!

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Susie-Marie says,

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.

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Andie says, 

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!

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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!