How Your Life Has Changed with RA

Give us a bit of your unique backstory. How did you learn you had RA?

I suffered years of unexplained symptoms before finally receiving a diagnosis of RA. In the interim, I was diagnosed with fibromyalgia and polymiositis, an autoimmune inflammatory disease that more commonly affects 50-year-old men. I struggled through pain and fatigue throughout law school and a few years of practice. When I stopped practising and worked as a legal editor in a non-profit, which was a better fit for me and closer to a ‘9-to-5’ job, pain and fatigue continued to limit my abilities and eventually affected my work. I kept pushing through, determined to meet my deadlines and not let anyone down. After the birth of my second child, my symptoms snowballed. My back went out. My eye became inflamed and painful. My lungs showed signs of inflammation. My hands and feet swelled up and became so painful I started having trouble getting up and down the stairs and doing regular self care tasks and chores. I was finally so sick I literally couldn’t get out of bed to get to work. In hindsight, I should have listened to my body and taken a medical leave much sooner. Determination isn’t always a good thing. Sometimes it can be too much. Eventually I was sent to the rapid access clinic at the rheumatology department of Vancouver general hospital and got a diagnosis. I was offered a six-week outpatient program at the Mary Pack Arthritis Centre to learn how to live with the disease. I eagerly accepted. I was so exhausted as I waited for the new medications to work their magic that attending the program was challenging, but I did and I learned a great deal about nutrition, pacing, safe exercise, and much more. I have since tried to return to work a couple of times and it’s always proven too much for me with my limited energy and need for extra rest. Nine years post-diagnosis I am still working on acceptance and not beating myself up for what I can’t do and what might have been. It has affected every aspect of, and every relationship in, my life. 

How has RA changed life for you and your family? Describe the changes that took place.

I have since separated from my kids’ father. The marriage likely wouldn’t have worked out in any event. My illness and the stress it placed on us definitely didn’t help. It also highlighted he lack of empathy and understanding in the person I had chosen as a partner. I couldn’t live with the negativity and criticism any more. While the future as a single person with chronic illnesses is scary, I have a peaceful and healthy space of my own from which I try to banish negativity. My children have been affected in that they have seen me sleep for hours on end, for days and sometimes weeks on end, and I’m often unavailable to them when I’m not well. They know that I love them beyond measure and they are my priority. They also know that sometimes, I just need to rest and can’t do anything else. They have learned to make the most of the times I can do everything they want and accept the times I can’t. I believe it has helped them to learn empathy, understanding, and some independence. I wish I could say it taught them to cook and do more chores! That part is a work in progress. 

What is the best advice you would give to someone recently diagnosed?

Rest, rest, rest. As much as you’re able. You’ve probably pushed through too much for too long and your body needs lots of sleep to fight the inflammation and start to heal. Don’t compare yourself to others. Grieve the things you have lost, but also try to find the silver linings: a slower pace, time with family, self-care, and a different perspective. What does your diagnosis or illness allow you or bring into your life that you would not otherwise have, know, or do? Seek support: in friends, professionals, and online. There are many others with similar experiences to share and lean on. Sometimes the most helpful thing is talking to or corresponding with someone who goes through the same things and therefore really understands.