Coping with Uncertainty

Life certainly holds a lot of surprises (global pandemic, anyone?), but I think it creates even more surprises for people with rheumatoid arthritis.

One day you feel OK, the next, your joints are swollen and stiff. One day you can stand on your feet all day (well, not in my case as a wheelchair user), the next, you’re too tired to get out of bed. And so on.

RA means living with the unknown

Perhaps, then, the most challenging part of living with RA is actually coping with the uncertainty. It seems to come from everywhere. How did I even get this disease? Why is it attacking me so aggressively? Why am I relatively OK on some days and feel terrible on others? Why do I get unpredictable flares, fatigue, pain, and so on?

It’s really hard to get a grip on this condition when there are questions and surprises every day. It makes it hard to maintain some semblance of balance when you don’t know how to plan, respond, or prepare for all the unknowns.

If you can handle the uncertainty, you can handle anything

I think the level of uncertainty people with RA have to manage eventually makes them more flexible and adaptable than most people. It’s a challenge every day, so when we adapt to it, we can adapt to just about anything!

It’s like a yogi who can wrap themselves into a pretzel shape. Sure, that’s not something we can likely do physically, but our mental ability to flow with all the surprises of RA makes us level one adapters.

It takes time after diagnosis and living with a chronic illness to understand what we are facing and experiencing. Even after more than 42 years of living with RA, it can still surprise me. There’s not a year when I don’t have strange RA-related symptoms or side effects that I have to learn about and manage.

Planning for the unexpected

Yet after some experience, I can sense these surprises and recognize them when they appear. I’ve also learned the signs of a coming flare, triggers for bad days, and a plethora of coping mechanisms for the primary symptoms I experience with RA. While uncertainty is with me every day, I have a toolbox of strategies I can throw at it and usually find at least some success.

It takes time to measure up RA and how we individually experience it. It also takes the flexibility of the mind to understand that it may change, shift course, and try to surprise us. I can think of it like surfing — trying to ride a wave of uncertainty and stay afloat. I may get pushed underwater at times, but I’ll always float to the top and try again (and again).

Accepting unpredictability is key

I think a major strategy for coping with uncertainty involves accepting it while planning for the best and worst. That way, I’m usually prepared for whatever the day or the RA will bring me.

It’s important to know that the uncertainty of RA will always be there. I can’t eliminate it, but I can understand it and be prepared to cope with it. When a bad day arrives, I can be ready (with medicines and a pain plan). And I can be open to tackling surprises by staying vigilant about my body and making quick calls to doctors when I don’t know what to do.

Most people know what to expect when they wake up the next day. In my RA journey, I have found that that is often not the case. Between a flare or weird symptom, lots of days hold many surprises. But I have to embrace the uncertainty and be ready for whatever the day brings.