Flares, Uncertainty, and RA
I will never forget the first RA flare I had. It was a warm summer morning in May, and I had just woken up from a night of tossing and turning. At this point in my life, I had not been diagnosed with RA and had only been experiencing mild joint pain and fatigue, nothing that warranted a doctor’s visit.
This flare quickly changed that. It felt as if a fire were radiating from my hip down into my knee. I tried to swivel my legs over the side of the bed but to no avail. I tried to stand up, but I couldn’t. In all senses of the term, I was stuck.
When will the next RA flare up happen?
Since being diagnosed with RA in October 2018, I’ve had a few similar flares, but none quite so bad. But the feelings of pain and the memory of that flare are seared within my mind. What I’ve noticed recently is that each time I feel pain—anywhere throughout my body—my immediate concern is whether that pain will develop into a flare like the one in May. It can be as small as a bruise or as bad as a sprained ankle; nevertheless, I always reference that RA flare in May.
Although I recognize that most of this is caused by my own anxiety, these experiences make me realize that RA produces specific levels of uncertainty and feelings of fear that are inherently traumatic.
Fear of RA flare up
Now that I am on Humira and other medications, the brunt of the pain I experience with RA is over, which reduces the number of flares I experience. But that doesn’t mean the fear of flares goes away. There are moments throughout the day where little electrical pulses of pain pulsate throughout my body.
Each ache or pain makes me worried
For instance, the most recent example came when crossing my leg during a meeting and found that uncrossing my leg after the meeting was over caused incredible pain in my knee. It was a pain akin to other flares I have had, but thankfully, my knee pain went away. While I’m so fortunate to be on Humira, each ache or pain, pins and needle sensation, each tremble or twist causes me to wonder: is this the beginning of a nasty flare?
How do I manage this uncertainty?
Lately, I’ve been trying to think of ways that I can mitigate some of this uncertainty. First, I’ve created a daily routine and have (tried) to stick to it. This includes consuming healthy foods, working, writing, reading, managing personal and academic projects, regularly traveling, cleaning my apartment, and trying to maintain a social life (among many other things).
Staying physically active
Second, I try to exercise as much as my body allows. Some weeks are better than others; some are worse. Regardless, keeping myself active has really helped both my body and my mind.
Accepting the uncertainty of rheumatoid arthritis
Finally, I try to accept that uncertainty is a part of this life and while this life with RA may not be ideal, it is what I have in this moment. More importantly, I have friends, family, medicine, tools, and a community that can help me through these uncertain times.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?