“Finding a community is never about comparison. It’s not about saying, ‘my struggle is less or more than theirs,’ or feeling less or more entitled than others. Instead, it means that you’re holding space for others to speak, to listen, or to be an ally.”
On a typically grey and rainy afternoon in Vancouver, Sophie walked towards me wearing a stunning floral top, a plum coloured jacket, and a vibrant smile. Sophie is an avid volunteer, dedicated student, yoga enthusiast, and field hockey player who is passionate about movement, mindfulness, and community engagement.
As a child, she grew up navigating the impacts of a kidney disease called nephrotic syndrome. At it’s worst, this disease causes intense and uncomfortable symptoms such as bloating and sporadic weight gain. Sophie explained that nephrotic syndrome has quiet periods where it is inactive, but it can spontaneously relapse from “anywhere between a few days to one month.”
“The rapid weight gain often led to extreme swelling in my face (‘moon face’), ankles, back, and wrists,” Sophie shared.
These symptoms, alongside medication side effects that further added to her discomfort, posed significant challenges to Sophie each morning when she chose what to wear.
“Each day was different. Sometimes, I would have one outfit that I would feel comfortable wearing. Other times, none of my clothes would fit me properly. I no longer had the independence to choose what I wanted to wear and express myself in the way that I wanted to. I had to wear whatever would fit. Through a lot of those times, I wore maxi dresses, which now carry bittersweet memories,” Sophie said.
Coping with the effects of Nephrotic Syndrome as a child, Sophie explained, is very different than dealing with the disease as a young adult. Today, she uses four key strategies to keep her wardrobe both functional and fashionable:
- Creating a Minimalist Wardrobe:
“I have a capsule wardrobe, with about 35 pieces in total. I tend to wear more neutral colours that I can mix and match easily. I genuinely love each piece in my closet. This makes choosing what to wear an effortless, yet enjoyable task that gives me a lot of peace. I like that I can walk out the door feeling confident in my decisions. While it can be challenging to invest in fewer pieces that are made to last longer, to me, it’s worth it since it has positively impacted my physical and mental health,” Sophie shared.
2. Opting for Flexible Fabrics:
“It doesn’t matter the rationale,” she said, laughing. “I will always buy the stretchy pants. They make me happier. I like to wear clothing that I can move in so that I have the option to stretch. It energizes my body.”
3. Adapting to Current Accommodations:
“If my body has suddenly and rapidly changed due to a relapse, I put away the clothes that I can’t wear for a while. Seeing the clothes that I love, but can’t wear, is never fun and can lead to more anger and frustration,” Sophie shared honestly.
4. Repairing Favourite Pieces:
“I learned how to sew, and now I can fix pants and other clothing pieces that rip due to sudden swelling. This also reduces how often I shop for clothes, which is particularly helpful when I’m not feeling well,” Sophie pointed out.
Quick Questions with Sophie
What might people be surprised to learn about you?
Walking and moving used to be very painful for me during my nephrotic syndrome relapses. Due to the swelling, I wouldn’t be able to stand for more than 10 seconds at a time. There was so much pressure being put on my joints and my back that the pain was excruciating. I felt weighed down. Trying to physically and emotionally move through those times was really difficult. I was often bedridden, which was frustrating. When I got better, being able to walk, run, and stretch made me feel so great. Moving my body everyday, whether it’s through yoga, dancing, or field hockey, makes me feel much stronger and much better. Sometimes, we underestimate the power that our bodies have. We might say mean things about ourselves and put ourselves down, but we forget that our bodies really move us. It’s important that we recognize that our bodies are responsible for so much of our joy.
Considering the challenges that you have faced, what do you consider to be your greatest accomplishments?
Today, I feel really accomplished when I practice yoga, on my own and with others. There are not many other experiences when we’re co-existing and connecting with other people so well. It’s an element of moving together that feels so great. I also appreciate knowing that my health is a bit more predictable. When I was younger, I could not predict my schedule due to the illness I was facing, so today, I consider it an accomplishment when I’m able to plan an activity and actually follow through with it. You never know what the next day is going to hold.
What advice would you offer to others who are
experiencing a similar health challenge to yours?
Find your community. I know that it can be really hard to put yourself out there and even be around other people, but it really helps to have that support. It can be easy to stay inside and shield yourself from judgment – and sometimes, we need to do that (and that’s okay). Even when it’s difficult, talking to someone about your challenges and facing an issue that’s on your mind can take a load off of your shoulders. Being involved in different communities allows you to focus on something else other than your illness.
When have you experienced that sense of community?
At a Girlvana Yoga retreat, while volunteering, playing and coaching field hockey, being part of G Day for Girls Vancouver, working with Syrian refugee families, and being a camp counselor. It all felt really meaningful. In each activity, I met like-minded people who were ready to help and support one another.
What do you feel most proud of?
I’m proud of the relationships and social connections that I’ve built. Being in the company of others has been an important lesson to me, but it’s often something that is forgotten. Connecting with others, learning about others, and being present with others has allowed me to rebuild myself, block by block.—–
Sophie shared that, during a recent relapse, “the As We Are community has really helped [her] in managing clothing choices and seeking guidance from others’ experience.”
We feel truly grateful and honoured to have learned about her story and the many ways that she demonstrates resilience, compassion, and kindness on a daily basis. We look forward to keeping up with her journey and seeing the positive impact she creates in her community!