April 29, 2024

Dorothyanne was at the gym when she first started to notice physical symptoms of something being wrong. It progressed to having memory issues at work.

“I would go to a meeting, and I would take minutes because that would help me remember. Then I would walk 50 yards from where the meeting was to my office, and I would not be able to remember what we had talked about even if I looked at the minutes. I found that terrifying because I rely on my mind, and it just wasn't working properly.”

About six months and many tests later, Dorothyanne was diagnosed with multiple sclerosis (MS), an autoimmune disorder that attacks the body. MS is an unpredictable disease that affects people differently. It was her 50th birthday present. 

“When the diagnosis came through, it was a bit of a relief in a way because I knew something had been wrong for a long time. I told myself it was probably because I was not exercising and not eating properly, but improving those things didn’t help. So when it ended up being an actual disease, it felt good in a way. I felt validated. But then it completely broke my life.”

Shortly after her diagnosis, Dorothyanne had to retire from her job in health management and started helping people differently. She started volunteering to help people diagnosed with multiple sclerosis, leading support groups and offering support. She also started teaching chronic disease prevention courses.

“When I deal with people who are just newly diagnosed with MS, I'm always watching them because the risk of suicide is very, very high in those first few years. You don't know quite what to expect, and your life is destroyed.”

Dorothyanne has learned about the power of taking small steps and celebrating little things, lessons she’s applied to teaching chronic disease self-management programs. It’s about picking one small thing you can do and completing it. Doing that small thing and building confidence lets you gradually take on bigger projects.

“I've had to reinvent myself many, many times because my abilities change. And looking at the small things is a helpful way to rebuild who I am because it's an achievable task

It’s still been incredibly challenging, the mental and physical changes. But Dorothyanne says it’s a matter of moderating activity and being aware of limitations. “It’s a hard thing to learn. I hate cancelling out on things at the last minute, but often I have to.”

Through all the bumps and headaches of managing an ever-changing mind and body, Dorothyanne says having a sense of humour has helped her deal with a chronic disease. 

“It's something I've noticed about many people with MS. I don't know whether there's damage in our brains that makes us funny or whether it's just because the disease is so unpredictable. Like today I can talk, but by this afternoon I won't be able to put together sentences. Yesterday I was working on an editing project and I had to deal with a computer problem and I couldn't do it. I was almost in tears because my brain just stopped working. So, you know, I could either sit and suck on how awful that is, or I can make a joke out of it.”

But the other problem shared by many others in her community, is that since Dorothyanne moved to Kingston a few years ago, she doesn’t have a primary care provider. There is nobody to manage her health medically.

“It's good that I'm a nurse because I sort of know what to ask for and what to look out for. But I feel for the people who don't have that background.”

“It's one of the reasons I wanted to be active with this (FLA OHT)--because there's this gap. While the self-management programs are valuable, you still need to have someone looking at your health as an overarching thing. Whether it's a nurse practitioner or a general practitioner, somebody needs to be looking out for you because things fall off the rails.”

When asked about advice for others recently diagnosed with a chronic disease, Dorothyanne says it’s really important to stay involved.

“If you're agitated about the state of health care, don't just complain about it. Get involved. Do something where you are seeing what's happening so that you know what's going on and you can have some input. Volunteering makes me feel like I still have a purpose. Early on when I was dealing with this, I remember saying, I feel like I'm just sitting around using up oxygen. And I have no real reason to be here. And my therapist said to me, “well, do you think everybody who has a disability has no reason to live?” Of course I said no! But I needed to find my focus, still needed to make a contribution.”

That's why Dorothyanne started volunteering and how she ended up as a member of the FLA OHT Community Council.

“It's very rewarding. It's affirming. I feel like people are being listened to and contributions are valued. I think for people who are thinking about volunteering, they should do it."

Learn more about the FLA OHT Community Council.