Two careers lost, a community gained: Jackie’s story

_“I was a young first-time mom and I loved taking our little girl out on walks on local trails. But, on those walks, I noticed my hands would swell, and sometimes they’d turn a little blue. It was the first symptom of what would become a lifelong journey with scleroderma.

I was fortunate in that, after my diagnosis, there was a good long time where this disease didn’t affect my life much. I had symptoms, but with medication, I could manage them for the most part. When things began to progress more quickly, though, it was dramatic. Suddenly I had lung involvement, and the swelling in my hands reached the point where I couldn’t keep working as a hairdresser, which was devastating because I absolutely loved that career. The women I worked with were like a second family to me.

With guidance from my sister-in-law, I went back to school and found an incredible second career as an Aboriginal education assistant working with First Nations children in the Campbell River School District. I’m First Nations myself and I grew up in this community, so I knew many of these kids personally. Working with them and supporting them through their unique challenges was fulfilling on every level. Scleroderma changed my life’s trajectory, but that change brought some real blessings.

 “It would have been easy to get stuck in a bad mental state after that, especially when I went online and saw how terrifying life with scleroderma can get.”

This work was easier on my body than hairdressing had been, but eventually my disease progressed further and I couldn’t continue with it either. It was so difficult to lose one career I loved in hairdressing, find another I loved, and then have that taken from me as well.

It would have been easy to get stuck in a bad mental state after that, especially when I went online and saw how terrifying life with scleroderma can get. I’ve been very lucky to have a strong support system in my husband, my friends, my daughters, my new grandson, and the wonderful people in the B.C. scleroderma community. My biggest piece of advice, if you’re newly diagnosed, is to not be afraid to reach out to your local community for support. That’s one thing I delayed, and it would have been so helpful for me if I’d done it much sooner.”