When we lose someone we love—a parent, a spouse, a friend—people tell us we have to take the time to grieve what we’ve lost. But I’ve learned that you can also grieve the loss of yourself.
Disease changes who you are, even when no one can see your symptoms. Rheumatoid arthritis, or RA, affects over 300,000 Canadians but few know the kind of journey patients such as myself go through because our disease is invisible. When you look at me, you don’t see “sick.” But like many other Canadians, I endured the emotional rollercoaster that comes with knowing, accepting and living with a chronic illness like RA.
One harsh winter morning in 2003, as I briskly walked to my office in Ottawa, I slipped on a patch of ice and slammed my knee on the pavement. My knee swelled. For a while I couldn’t walk properly. But I’ve never been one to run to the doctor for every little thing. I shrugged it off figuring it would go away on its own. But then pain began to spread to one of my shoulders and both wrists.
Later on I would learn that these sudden onsets of pain are called flares and they cause excruciating pain that made my joints hot to the touch, and cause flu-like symptoms and extreme fatigue.
At that time I was determined to push through the discomfort as I was six months away from my wedding and was focused on the planning and excitement. I remember thinking if this thing is going to kill me, I don’t want to know what it is. Let me get married first then we’ll deal with whatever this is later.
As Richard and I set off on our honeymoon, the pain subsided but promptly returned as soon as we got home. I knew something was wrong and I had to see my doctor. She ran blood tests and x-rays but could not pinpoint the issue. To her I was a young, healthy-looking woman complaining of agonizing pain without an obvious cause. To me, my pain meant something bigger.
After several visits, I demanded to see a specialist and the very first thing my rheumatologist told me was that I should have come to see him months ago. He told me I had a very aggressive form of rheumatoid arthritis, an autoimmune disorder that was causing my immune system to attack my body’s own tissues, enflame my joints and damage my cartilage. I would likely be on medication for the rest of my life.
I reflected on my condition. I was hobbling around, barely able to open doors and take care of myself. I couldn’t do the things I loved anymore. I had a fast-paced job that required many hours of work, I trained in the martial art of judo, I biked to work, and in the blink of an eye the ability to do those things had been taken away from me by my own body. I was overwhelmed with a barrage of questions. Why was this happening to me? Why was my disease progressing so quickly?
And then the other shoe dropped. Having just been married and being already in our 30s, my husband and I dreamed of starting a family and having a little one to run after. But with my disease out of control, I was at a crossroads. I discussed my options with my specialist. Starting a family now would mean less availability of treatment options to slow the RA, potentially resulting in significant and severe joint damage. Getting on the right mix of medications would slow and stabilize the RA, but no one could predict how long that could take. For now we had to put a pin in those plans. How could I take care of a tiny human being when I couldn’t take care of myself?
Though it was difficult, Richard and I decided to hold off on having kids. I began the arduous process of finding the right medication for my condition. As my rheumatologist predicted, finding the combination of drugs that suited me took a long time.
It was a year and a half of trial and error, and in that time I realized I was not the same person anymore. I was not me, but me with my disease. I went through phases of feeling angry and hurt and depressed. But in the end I knew I had one of two choices: I could feel sorry for myself, or I could move forward. I had to mourn the person I no longer was and accept the person I had become. This was the problem in my head, and once I figured it out I felt lighter.
In 2005, my rheumatologist and I settled on a combination biologic medication that improved my condition and allowed me to live a much more normal life. It eliminated most of my joint pain, except for the pain in my shoulder which steadily grew worse. Since my first flare, my shoulder sustained severe damage and required surgery. The doctors warned me that shoulder replacements, like all joint replacements, have expiration dates. They will last 10 or 15 years before they need to be swapped out for newer parts, but the second will never be as good as the first. I wanted a child and I was finally stable enough to have one. For me, having a pain-free shoulder was important for me to care for my child like other parents do. I opted for the surgery in July 2006 and eight months later learned I was pregnant.
Call it a gift or just good timing, but I went into complete remission during my pregnancy and got off my medication. In October of 2007, Richard and I welcomed our beautiful baby boy, Mathieu.
Having a child was the best thing in the world for me and I threw myself into parenting. Though I couldn’t – and still can’t – climb the monkey bars with Mathieu or teach him how to cartwheel, I learned to be happy with what I could give him: camping trips, days at the pool, fun bike rides around the neighbourhood.
Since my diagnosis, I have learned that in order to live and not suffer from my condition I had to take control of my life. That means making the choice to allow a better life to happen, and see the world as a glass half-full. I made some changes and now have a fulfilling career with better work-life balance to give myself more flexibility and time to spend on things important to me like my health, my marriage and raising my son, as well as do some volunteer work. I have since traded in my old medication which, though it helped with the pain did not help as much with the fatigue, and started a different one called Actemra that better managed my pain and fatigue. I became more proactive in managing my health and being my own advocate by seeking information and asking my doctor and others in my health care network key questions at each appointment. I also underwent another surgery to give my shoulder a few more years before losing much of its mobility.
Another thing that helped was finding others who are going through the same things I’m going through. I found solace from the Canadian Arthritis Patient Alliance (CAPA) where I met people who really understood what I meant when I told the person in front of me I was having a tough day or feeling tired or experiencing a particularly bad flare. They are exactly where I am. Today I volunteer with CAPA and help other patients live better with RA, too.
On the white board at my desk, I have three words written in red and captured in a frame: thankful, positive and forward. These three words have helped me reframe my outlook on life and constantly remind me that while there are many things I am not anymore, I am a new me and I am choosing to be thankful, think positively and always, always, move forward.