Melissa’s story

Melissa has been living with myositis since 2019

When did you start experiencing symptoms?

In December 2019 I had a rash on my chest. Then I noticed I was getting tired. At the time my daughter was 2, and I was working, so I thought I was just tired from that.

How did your symptoms progress?

I couldn’t really stand up and take a shower anymore. I dropped a pen on the floor and bent down to pick it up and had this intense electric pain come through my thighs. I went to my primary and they referred me to a rheumatologist. By February 2020, I couldn’t get out of bed and they admitted me to the hospital.

How has this changed your life?

My life changed overnight. I wasn’t able to care for myself, when I had been a very independent person. To lose that independence was very depressing. I’m going three years later and still not stable. I’ve tried every possible common medication, but I’ve either had reactions to them or they just wore off after taking it.

Do you have any advice for others with myositis?

I’m involved with a support group and would highly recommend that to anyone who is newly diagnosed. I know it seems hard or you may feel embarrassed, but I assure you it’s a safe place.

“This disease is such a roller coaster. One minute you’re feeling well, and the next minute you feel like a freight train has knocked you off your feet.”

What is the atmosphere like in your support group? 

With a support group, you don’t have to explain yourself. This is an invisible disease. People in the group get that. You think you’re the only one, but once you start talking to people with similar experiences it’s amazing.

How do you overcome the challenges of living with myositis?

Definitely my family and my support group. That’s what really kept me motivated through all this time, along with gaining some independence back. Now I’m able to drive myself and I can care for my daughter more. Regaining that independence has really helped me.