As we explore accessibility in sewing, we at Sewcialists want to highlight disabled makers and honor their stories. I reached out to Sarah of @meinthemeantime for an interview. We got together on Zoom and swapped diagnosis stories and talked about how our perspective illnesses impact our lives.
I’m so honored that Sarah trusted me to tell her story. Sarah Hill is a maker, mother, and trauma therapist living with lupus. Sarah’s creations are so full of joy and love. Her story of choosing compassion and self-acceptance is aspirational and life-giving.
Like many makers, Sarah’s diagnosis was actually what led her to sewing. After a string of medical events, her life changed dramatically in 2018 when was diagnosed with lupus. In the wake of these huge changes, Sarah found joy in sewing.
“Before sewing, I was doing too much and loving it. I was doing clinical work as a therapist in private practice, I was teaching a grad school course, I was the room mom for my kid’s school, I was the preschool coordinator for my daughter’s class, and I was doing speaking engagements. All of that was taken away—one after the other.
I had known for a decade that something wasn’t right. I was asking for help and being told by doctors that I was being dramatic, too sensitive, that it was all in my head. After my daughter was born, my body just lost it. It was chaos.
Finally, doctors were able to connect all these weird things—pericarditis, miscarriages, chronic pain, complex migraines, and extreme fatigue. I was told, ‘You have lupus.’ The subtype I have is called Lupus Nephritis. It’s an autoimmune disease where the body attacks itself thinking healthy cells are foreign invaders. It impacts all of the body’s symptoms and causes lots of inflammation.
I had all of this loss and grief. It was really heartbreaking. I needed an outlet, a creative outlet. I needed something I could do without leaving my house and something that I could do sitting down. That’s why I started sewing in May 2019. I asked for a sewing machine for Mother’s Day, and sewing and I have been BFFs ever since!”
Dress Her in Sacks and Rags
After the diagnosis, Sarah tried to put her life on pause instead of facing her new reality.
“I thought, ‘Well, now that I have a diagnosis, everything is gonna be great. I’ll be done in three months—maybe six, tops. Then, I’ll be back and back at it again! I’m gonna conquer this!'”
But in the six months following her diagnosis, Sarah’s symptoms worsened, and she experienced severe side effects from the medications meant to manage her condition. Sarah described feeling stuck between grieving her past self and orienting her future to getting her old life back.
“I put my life on hold. I was punishing myself for not being well. It revealed a very ableist view of what it means to be human and what it means to be fully valued or worthy of anything. I believed this fat body wasn’t beautiful, wasn’t worthy of pretty clothes—dress her in sacks and rags and put ashes on her face until lupus is gone! This response to my body was indirectly affirming the idea that people who aren’t fully functioning don’t deserve to have a full life.”
Living with Lupus
On the eve of 2020, Sarah and her partner discussed setting an intention for the upcoming year. Sarah excitedly imagined all the things she’d do when she was free of lupus. Her partner gently asked her to consider something wildly different: “What if lupus doesn’t go away? Who are you with lupus?”
“That question completely changed everything for me. It was uncomfortable, but it changed everything. Forget putting everything on pause—I’ve got to radically accept it. This is what it is right now. That’s why I chose my handle for Instagram—Me in the meantime. I started asking, Who am I? Not just what I do—what is actually truly part of who I am?
‘I am joy. I am Black. I am caring. Lupus cannot take that away no matter what.'”
Sewing for a New Body
This realization opened her up to a whole new world of possibilities and challenged her to accept her body’s appearance and ability. Instead of saving the “good fabric” for an imaginary time when things were “better,” Sarah began taking risks, being playful, and discovering her new style.
“I want to make clothes that fit how I feel inside. This body is new to me. I had a style and a vibe, and it’s changing. Now, I’m being playful, like, ‘What do I want to put on this new body? What does she want to wear? What kind of vibe is she into right now?’
Pattern testing has been a great way to experiment. There are some that I’ve loved that I probably wouldn’t have picked for myself. When a pattern or new fabric is calling to me, I say, ‘Just do it! If you hate it, you don’t have to wear it!’
Sewing is a way to fit this body. I can try on clothes and make them suit whatever measurements I have that day because they’re all over the place. With sewing, I can try to convey the sparkle I have on the inside through my clothes. It makes such a difference having clothes that fit me. I can put this dress on and feel comfortable. I feel happy. I feel me in it.”
Radical Acts of Self-love
Learning to be patient and loving with her body is as much a practical skill in her sewing practice as it is a mantra for inner healing.
“Everything I make is a radical act of self-love. I’m doing it in faith. The last year has been such a mental journey towards compassion. There was a study that came out after I was diagnosed that linked childhood trauma and Lupus.
When I reconceptualize my condition, my body, the pain system, seeing it as a jumpy child or a frightened body, it helps me have a lot more compassion. Instead of frustration like ‘What’s wrong with you? Why are you attacking yourself? Why are you so broken?’ I can move toward compassion like ‘Wow, body, you’ve been through a lot, and you’re responding accordingly.'”
Sewing as Mindfulness
“I’m a results-oriented, efficient, fast person. Sewing with a disability has forced me to be much more intentional—almost mindful—of the process. I can’t just go hard and fast. My body won’t let me. I will completely crash. My hands will shake. If I push myself too far, I could pass out.
Sewing was like an act of aggression. ‘Doer-Sarah’ was holding a gun to my head, threatening me to finish something, saying things like ‘Why can’t you just do it?’ and forcing me past the point of wellness. It was a really assaultive way of treating myself. If I make these pretty dresses for my body, but I do it in a way where I’m forcing myself to do it, then that’s not self-love.
‘Measure twice, cut once’ has been a huge personality shift for me. It’s helped me slow down and look at the minute details, take my time, and know when to stop. I’m still working on stopping at a mindful place, not just when my body says, ‘You’re going down!’ Saying, ‘This is enough, you can pick it up tomorrow,’ that’s self-love.
I can’t always sew every day. I really, really want to, but my body says, ‘No, you can’t.’ I’m trying to be more intuitive with my body, to notice what’s happening—not even to change anything, but just be aware of what I actually want and need in that moment.”
“We’re taught not to trust the signals of our own bodies. Part of having a chronic illness is being gaslit by medical professionals. Some tell us we’re overly sensitive, dramatic, that it’s all in our heads.
There are consequences to being told what you’re experiencing isn’t real, isn’t valid. For almost a decade, I practiced ignoring the signals of my body.
We’re told, ‘Don’t take up space, just fit in; don’t make any demands of your environment, just assimilate.’ Asking for help, making demands of the environment, taking up space—that all goes against the Western ideals of independent, go-getter grind culture.
Me saying, ‘I’m a Black woman, I’m gonna take up space’ is helpful for reconciling my disability. I’m gonna be here, I’m gonna make the requests of my environment that are valid, and I’m not gonna shrink to hide myself. I refuse. I’m unapologetically Black. Can I be unapologetically disabled? I don’t want to apologize for my body and what she can and cannot do. I want to be unapologetically and fully me. It’s a work in progress.”
Bri Ooms is a queer disabled sewist and temporary editor with The Sewcialists. Bri is an Oregon girl and West Coaster at heart, but she currently lives in The Netherlands with her partner, toddler and fluffy cat. Find her @BriMichelleMade on Instagram or blogging at AStitchAcrossTheSea.com.