A Very Personal Take on RA
The world isn't geared toward the chronically ill. Instead, we have to carve out our place. And after five decades of living with RA, our new columnist Lene Andersen has some things to say about that.by Lene Andersen, MSW Patient Advocate
It’s time to move on.
But thankfully—because I hate change—I’m not going far. In fact, we’re already here. Welcome to my new column, “Made with RA!”
Turns out there’s more to living with RA than simply arming ourselves with the latest research and information—what I’ve mostly written about here at HealthCentral for past 11 years. There’s also our shared frustration, joy, rage, advocacy, and laughing at the ridiculous (and boy, is there a lot of that, starting with hospital gowns). And in the middle of that is where you will find me from now on. My editors at HealthCentral, bless them, have decided to enable my tendency to be chronically opinionated. They’re actually giving me a platform and free reign (more or less) to write about what matters to you and to me from a personal perspective. "Made With RA" will appear twice a month, right here on the HealthCentral RA site.
But first, I should give you my “RA resume” so you know I’ve got the chops to talk about this stuff.
I don’t remember a time when autoimmune arthritis wasn’t part of my life. The first signs arrived when I was about 4 years old, and for the next five — yes, FIVE — years, my parents went from doctor to doctor, trying to get an answer. They got a bunch of answers, including that there was nothing wrong with me and a suggestion that my mother seek psychiatric help, but it wasn’t until I turned 9 that a new doctor took one look at me and told us what was wrong.
Juvenile idiopathic arthritis, he said. Well, not exactly — I was born and raised in Denmark, so he told us the Danish equivalent. But it all boils down to a diagnosis of a condition that would follow me for the rest of my life. RA has been my unwelcome and very insistent shadow for a really long time. In fact, we recently celebrated our 53rd anniversary together.
I mean, any excuse for cake, right?
Back then, this condition was called juvenile rheumatoid arthritis because it appeared identical to the RA seen in grown-ups and therefore was believed to be a childhood version of the condition. These days, we know that it is a separate type of autoimmune arthritis, but in me, it acts similarly enough that I now call it RA. Also because people look at me strangely if I tell them I have juvenile arthritis while claiming to be middle-aged.
Mentioning my age in this roundabout manner is not with the intention of giving you the opportunity to call me an old fart. It has an entirely different point. Namely that I grew up in a time when there were no effective treatments for autoimmune arthritis. For much of my childhood, I lived in a rehab hospital doing physical and occupational therapy, and having my joints drained on a regular basis. That was the treatment. Well, with the addition of gold shots that did not work, either by suppressing my disease or turning my arse into 24-carat gold.
By age 16, I had two brand-new hip replacements and a power wheelchair. I finally went home to live the best life I could. It’s been a good one, in amongst the disease-related curveballs that inevitably make things “interesting” on a regular basis. I moved to Canada, went to university, made friends and did silly things, enjoyed my family, dated, worked, then didn’t work, had a massive flare that ate my life, and (thankfully) found my miracle medication and got a second chance at life. I’m making it the best of it, chasing my dreams of writing books and loving life. Because I have discovered that I am far happier when I focus on joy.
But what about those curveballs? you might ask. They are definitely a big part of my life. Every day, I battle the effects of RA, as well as the other conditions that have joined it over the years (fibromyalgia, asthma, PTSD). Because apparently RA feels better when it travels with an entourage? I still have a disability and use a power wheelchair, I’m still spending much more time in the healthcare system than I’d prefer, and like many of you, I continue to stumble over barriers in this world made for the healthy and able-bodied. Sometimes I succeed in the fight, at other times, I feel like Don Quixote railing at windmills.
Made With RA
If there is one thing I have learned in my lifetime with this condition, it is that living well with RA — rather than just existing — is about carving out a life with and around the condition, while holding on through the ebb and flow of an unpredictable autoimmune disease. How you live is very much a matter of perspective and where you choose to focus. I view my life as a soup, full of many delicious ingredients, and also some I don’t particularly enjoy. RA is an ingredient that flavors the soup, but it is not the main one. Consider it akin to the carrots in chicken soup — important, very much present, but the chicken is the star.
I acknowledge that my RA and all the (frankly) medical crap is here, I jump through hoops, and spend a lot of time strategizing my day and how I use my energy. But I fight just as hard, maybe harder, to focus on the life (chicken) bit. And that’s the perspective that’s going to guide this column.
I’ll continue taking care of our wonderful RAHealthCentral Facebook page, sharing that gig with Cathy and Emil. If you have an idea or topic that’s burning a hole in your mind or heart, find me there and tell me your story. It might just make it into this column.