What Accepting Your RA Really Means

Truly coming to terms with a chronic diagnosis like rheumatoid arthritis isn't something that happens only once. It's something you'll do over and over again.

by Lene Andersen, MSW Patient Advocate

Let’s say you found an old lamp at a flea market and it had a genie inside. What would be your first wish? I know what mine would be. I’d wish to be cured of my rheumatoid arthritis (RA). No one’s crazy enough to actually choose to have a chronic illness, and since there’s currently no cure (and I’m still searching for that magical lamp), having RA is something I’ve had to learn to accept over the half-century I’ve had it. What no one ever told me was just how much work it would require. In fact, it’s taken decades—and the right treatment—to get here.

I grew up with this disease in an age when there were no effective treatments, so by the time I was 16, my RA had screwed up my body so much that I needed a power wheelchair. In addition to living with the daily pain, inflammation, fatigue, nausea, and other delightful symptoms, I had the extra barriers that come with being a wheelchair-user. I was very sad for a very long time, constantly caught up in what I couldn’t do. I focused on the “if onlys”—if only I didn’t have RA; if only I could walk; if only life were different. There was even a time when I thought that the only way to end the pain was to end my life. In those darkest of times, the response I received from loved ones and my doctors was the same: You have to learn to accept this. Acceptance is the last concept in the five stages of grief and grieving is very much what you do when you’re diagnosed with a chronic illness.

For decades I cycled through each stage of grief. I went through the shock, the denial, the depression, the bargaining. But despite many rounds of therapy and promises that I would feel better, I was still sad, far into my aching bones. It wasn’t until 15 years ago, when biologic medications finally suppressed my RA, that I finally reached a real level of acceptance. As the new medication began lifting my pain, the sadness began to lift as well. As I was able to do more, I wanted more, and I wanted a better life. The solution was to quite deliberately choose joy in this life, just the way it is. That's when I discovered that acceptance is not a destination you reach once and remain at forever. Instead, it's an ever-shifting ephemeral state, one that must be protected and nourished every day.

The “if onlys” are ever-present and seep in through the smallest cracks. They infect me when watching snow and shadows as I drive by a park, idly wishing I could walk deep between the trees, capturing the beauty with my camera. Or when I miss my niece and nephew, wishing I could visit them. And then the “if-onlys” grow and escalate into desires of riding a bike again, writing without having to stop after an hour to rest, of being able to make my own dinner yet again, and, most prosaically and profoundly, of using the washroom without help. You let one of these wishes in, and it brings an entourage. And the more they pile up, the more depressed I become and the more I long for a different life.

If only I didn’t have RA. That singular thought leads to an abyss that chews me up and drains my soul. If I open the door to the things I cannot have, the dreams left behind, I begin to love my life less. So instead, every day I practice acceptance. I do it by choosing to be positive. When I’m in the middle of an RA flare, I remind myself that it is temporary and that I have the skills to cope. When I encounter accessibility issues when I’m out and about in my wheelchair, I use my voice to advocate for change. When I’m sad or angry, I allow myself to sit with the feelings for a short time, to acknowledge and process them. And then I go find a video that makes me laugh, a moment to be grateful, or work on my new dreams. I police those “if onlys” so hard that they rarely get a foothold. At times they still do. But now I’m better at noticing before they get embedded, and I seek help.

There is no shame in therapy.

Michael J. Fox, has lived with Parkinson's disease for almost 30 years now, and he has said: “My happiness grows in direct proportion to my acceptance, and in inverse proportion to my expectations.” That’s it, exactly. Wrangling your expectations, keeping them within the realm of the new normal and blocking the “if onlys,” is the key to acceptance. I became a writer in my new life, but I let the work develop organically, setting gentle goals and keeping my expectations of how much and how fast I can write in check. Every time I get frustrated, I bring myself back to acceptance within my reality.

It's easy to get stuck in believing that RA is all that stops you, the only reason you cannot do whatever it is you want to do. And although that may be true if you wanted to become a trapeze artist, mostly it's a scapegoat that keeps you from dreaming new dreams, from finding joy in your life as it is. Everyone has limits, whether they live with a chronic illness or not, and the trick to finding happiness is to make the best of the life you have. Continue dreaming. Continue pushing for what you want. Go forward, not looking back to dwell on what once was. That is where you will find your happiness.

Lene  Andersen, MSW
Meet Our Writer
Lene Andersen, MSW

Lene Andersen is an author, health and disability advocate, and photographer living in Toronto. Lene (pronounced Lena) has lived with rheumatoid arthritis since she was four years old and uses her experience to help others with chronic illness. She has 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. Lene serves on HealthCentral's Health Advocates Advisory Board, and is a Social Ambassador for the RAHealthCentral on Facebook page, facebook.com/rahealthcentral. She is also one of HealthCentral's Live Bold, Live Now heroes — watch her incredible journey of living with RA.