Living with a chronic illness like rheumatoid arthritis (RA) changes your life in untold ways, both large and small. Some are difficult, but sometimes good changes happen. For May’s Arthritis Awareness Month, I’d like to share some of the ways RA has changed my life.
1. Hand deformities
One of the hallmarks of untreated RA symptoms is hand deformities. This disease twists joints into odd shapes, and my hands bear the marks of growing up at a time when there were no treatments. They don’t limit me too much, though. Sure, flexibility and strength are impaired, but I’ve found ways to do what I need to do anyway.
My hands aren’t the only joints that have been changed by RA. Every joint in my body bears the marks, as well, and all of them have limited mobility or have fused by the disease. I have a permanent disability and started using a wheelchair in my teens.
3. Adaptive tools
My home is littered with adaptive equipment and tools that make me more independent. The most important is my power wheelchair which enables me to get around on my own, buy groceries, do my own banking, and just move around my home. I also have reachers, dressing sticks, and an accessible bathroom and kitchen.
4. Needles don’t bother me
I’ve been stuck with needles for decades for frequent blood tests, joint drainage, steroid shots, Biologics shots, and for many other reasons. All this exposure to the pointy things has made me so used to them that I’m no longer afraid of needles.
5. Advocacy skills
Living with a chronic illness has taught me to stand up for myself, to advocate effectively with doctors and others. And best of all, it has allowed me the opportunity to become an advocate in a wider sense, contributing to create awareness and understanding about what it’s like to live with chronic illness.
6. Joint replacements
I had both hips replaced when I was 16 years old. At the time, this enabled me to get out of the hospital bed in which I had spent the previous two years, unable to sit due to fused hips, and into my new power wheelchair. And then I went home to lead a normal life, going to school with my friends, and eventually moving to Canada.
7. Chronic pain
I’ve lived with chronic pain since I was four years old. It is an integral part of my life—a constant companion. It has taught me that pain isn’t the worst thing that can happen — not living your life is worse. Although it has brought me to my knees more than once, most of the time I’m able to live my life around and with the chronic pain.
8. An innate sense of time
After spending most of my life taking medication at specific times, I’ve developed an internal clock. Ask me what time it is and I’m usually right, give or take 10 minutes.
9. Brain fog
Like many other chronic illnesses, RA comes with a healthy dollop of brain fog. There are times when it feels as if I can’t find the right words. Most of the times, my memory is lousy. I try to make a joke out of it, but I miss feeling mentally sharp.
10. Medical friends
When you have a chronic illness like RA, you become a frequent flyer in the offices of several doctors. It can create a different relationship than you normally have with doctors and their staff. They know my life, and I know parts of theirs that they would not normally share with patients. I’m lucky that I have good doctors. I’m even luckier that they are great people, too.
How has RA changed your life?
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Lene writes the award-winning blog The Seated View. She’s the author ofYour Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.