Living with rheumatoid arthritis (RA) isn’t fun. If life is a dance on roses, when you have RA it can feel like a dance (OK, more like a limp) on thorns. And it can be really difficult to not get pulled under by the riptide of pain, fatigue, and waking up every day feeling awful. Approximately 30 percent of people who have this condition experience depression, about a third of those so severely that they become suicidal. I’d wager that even those who haven’t experienced a clinical depression know what it’s like to feel dejected.
You don’t have to be in a severe flare to feel the encroaching bony fingers of hopelessness picking away at your composure. I had to stop taking my biologic for a bit over a month right after the holidays and could only re-start the medication after my RA had popped up its ugly little head again. Mostly, I was exhausted, although there was also some joint activity, particularly in my sacroiliac joints.
It was literally a pain in the arse.
It took a couple of months for my medication to build up enough in my system that it pushed down the RA again, but I’m still tired. More than tired — I have maybe a quarter of the energy I had before the holidays. And it’s starting to feel as if this is how I’m going to spend the rest of my life.
Enter catastrophizing. This is a term used by researchers and doctors to describe an irrational thought that something is worse than it actually is. In the past several years, it’s increasingly used to describe the reactions of people with RA to the disease.
You might say that it’s easy for these (healthy) individuals to assess a reaction as excessive. It may very well look like it from the outside. But from the inside of RA, from existing in a place of such deep exhaustion and pain, it is not catastrophizing.
From in here, the feeling of doom is real. If you are new to this condition, saying (for example) that you have never been in more pain, it may be objectively true. Most healthy people don’t go around in daily high pain levels unless they break a bone. And even as a veteran of RA, the neverending persistence of the symptoms can wear down your coping skills very quickly.
Peaks and valleys
The longer you live with RA, the more perspective you get on the cyclical nature of the beast. There are valleys, sometimes deep, deep valleys, of the flares and pain and bone-crushing fatigue. But there are also peaks, times when your RA simmers down to tolerable levels for mysterious reasons or, more often, times when the meds work. And when you have RA for long enough — several decades, for instance — you see this pattern repeated over and over again.
RA is like anything else in your life, be it relationships, work, or any other facets that are a constant. None are perpetual doom and gloom, nor do they exist at a level of everlasting bliss. Most of the time, they are somewhere in-between.
This is not to minimize the impact of RA. This is a serious illness that can be very destructive if left on its own. Building a good health care team that will fight hard to get you out of the valley is an essential part of the journey.
Developing coping skills is another tool that can help when you’re stuck in the shadows. Nurturing a sense of hope that you can and will climb back onto the peak is the foundation of your toolbox of coping techniques. Some people find the hope through religious faith, others through the love of family and friends, and yet others rely on stubbornness. It’s not important how you get there, only that you do.
A friend of mine once told me a quote that he said was from the Torah, although others claim it originates from a Persian fable. I’ll leave it to the scholars to decide, while I hold on to the truth and the power it holds and the hope it gives me.
“This, too, shall pass.”
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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.