Ariane’s Style: Getting Creative to Find Comfort with Complex Chronic Illness

“I am working on accepting my current self and my current health. I am learning how to live a good day-to-day life despite what’s going on.”

When I was introduced to Ariane by a friend, I was immediately impressed when I learned that she designs and sews her own clothing. I was excited to look at her collection of dresses- abundant in floral prints, polka dots, and classic colour schemes. I was in awe of her talent and the high quality of each clothing piece.

I asked Ariane about her interest in fashion, assuming that it had been a longstanding passion. Instead, she surprised me by expressing that her “relationship with fashion has been complicated.”

“Since I have invisible illnesses, I’ve had a difficult time getting people to take my health conditions seriously because I look okay,” she clarified. “I look healthy at first glance and especially when I dress nicely, even people who know I have chronic health issues often assume I’m feeling well or have recovered.”

For the past several years, Ariane has been living with “complex chronic illness.” Without clear answers about many of her health issues, she is still seeking to resolve her daily pain and discomfort. She shared that she has been diagnosed with a variety of conditions over the years, yet treating her symptoms has become increasingly difficult.

Although Ariane was in between medical tests when I met her, she kindly and bravely offered her time and energy to tell As We Are about the way fashion fits into her life.

Ariane learned how to sew as a teenager, but it was not until a couple of years ago when she had to stop knitting due to hand pain that she started to explore her old hobby.

“I decided that I wanted to try making a dress. The first thing I made was a disaster,” she said through laughter.

“The second piece I made was really beautiful. It was way outside of my comfort level in terms of my skill set. When it turned out well, it boosted my confidence a lot. Ever since then, it’s been a lot less intimidating trying new patterns. I found so many great online creative classes that I can access from home, like tutorials on how to sew a pocket and pattern drafting classes.”

Ariane’s pace quickened and her eyes sparkled as she explained the impact that sewing has had on her daily life.

“It’s a great creative outlet for me. I really like to express myself through what I wear, and I really like to wear things I’ve made. It helps me feel more like myself at a time when a lot of things are outside my control. I also love being able to make pieces that fit me properly and that are more adaptable because I’ve had a lot of weight fluctuations.”

When I asked Ariane about the adaptations she has made to her clothing, she shared three clothing choices that have guided her toward a creative, yet comfortable style:

  • Dresses reduce stress: In recent years, Ariane discovered that she loves wearing loose dresses. Not only is this a comfortable option when dealing with GI (gastrointestinal) discomfort and weight fluctuations, but she also shared that dresses are versatile and can help keep her comfortable in cooler and warmer temperatures.
  • Look for layers: Ariane’s go-to outfit is a dress or t-shirt worn with leggings, boots, and a sweater. Most of her wardrobe is easy to mix and match so she can easily transition between daily activities, from stretching exercises to heading to a doctor’s appointment.
  • Seek out comfortable materials: Ariane gravitates towards knit fabrics that are flexible and soft, cozy woven materials. When she is sewing, her favourite is a “double gauze” fabric that is light to wear and soft to the touch.

Quick Questions with Ariane

Over the years, have there been times that you have surprised yourself with something you accomplished?

Previously, finishing my Master’s degree was a big accomplishment. It was a real struggle by the time I was at the end of it, and I was happy that I was able to finish it. More recently, learning how to be a more persistent and resourceful person has been a big achievement. It’s a skill to be your own advocate. People have told me that they admire my persistence and patience in the process of sewing clothes, and also in the process of figuring out what’s going on with my health. I want to do whatever I can to make my life better; whether that’s with my health, or learning new skills.

What might our readers be surprised to learn about you?

They might be surprised at how unwell I am most days. I have significant physical limitations which have become progressively worse over time, and have to be very careful with how I use my time and energy. It’s been hard for me to reconcile how I look versus how I’m feeling… and to be able to communicate that to people in my life without sugar-coating it to make it less scary or negative for their benefit. When I minimize my illness for other peoples’ benefit, it shifts the discomfort onto my own shoulders, and I end up having to push myself to act as if I’m more well than I am. An example I always get a kick out of, is that sometimes people see me wearing something I’ve sewn for myself and ask if I will make them one. They usually just mean it as a compliment, but don’t realize that it may have taken me months working on it a half hour at a time a few days a week to finish what someone healthy could do in a weekend! “Life in the slow lane”, as I like to think of it. It’s not so bad, I have more time to appreciate the simple joys.

What advice would you give to others who are going through something similar?
Connecting with other people and not keeping it to yourself is really powerful. I didn’t start telling people that I had chronic illness until my early twenties. It can be isolating and difficult to deal with it yourself. Now, there are lots of online support groups, and more awareness in general. When you start sharing what’s going on with the people in your life, suddenly others will start confiding in you that they or someone they care about is living with chronic illness too. The honesty helps forge deeper connections with people. And sure, not everyone may get it or be interested, and that’s okay.
Also, educating yourself about your diagnoses and learning to advocate for yourself is important; nobody will ever value your health as much as you!

Where do you feel people stumble with their understanding of complex chronic illness and what changes would you like to see?

Each symptom or illness is often looked at separately, even in the healthcare system, and what’s not always seen is what it all amounts to. If the symptoms are not visible, it’s so easy for people to say: “You look great today!” and “I wish I could lose weight too!”…when in reality, not all weight loss is good and what they see is very disconnected from how I’m feeling. It’s not healthy for me to be 20% underweight, and trying to live a “normal” life each day feeling like I have bad case of the flu is very challenging. It would be nice if people could be more aware of what they’re saying around people with invisible and chronic illnesses, and ask rather than assuming, which can feel very dismissive.

Given the challenges you’ve experienced over the years, what are you most proud of?

I’m most proud of where I’ve gotten to with my outlook and with my emotional health. I’ve come a long way with that. I used to have a lot of anxiety and put a lot of pressure on myself. I would have a lot of negative self-talk around being sick and how it held me back. Especially in the last year, I have made a lot of progress with self acceptance and self care, which is helping me be more optimistic about what I can still do with my life.

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It put a smile on my face to know that Ariane is discovering different activities that are bringing her life meaning during a difficult time. When I finally asked her about what she is currently most excited about, her response moved me.

“I am allowing myself to envision what I want my life to look like again. I haven’t made a lot of progress on the medical side, but my resilience is kicking in. I’m recognizing that even if I don’t end up feeling better, I can learn how to adapt and cope even better with my illness, even when it comes to challenges like socializing, working, or finding ways to travel again. These are things that I really miss. I have a really great, supportive partner, and I can envision us still having a really good life.”

Ariane writes a personal blog about her creativity and chronic illness adventures at http://arianek.com. She and her partner are also currently building a sewing community website called Textillia, which they hope will become an opportunity for flexible self-employment that will accommodate Ariane’s health needs.