The Long and Winding Road of RA

It never ceases to amaze me, even after nearly 25 years since my diagnosis of rheumatoid arthritis, how circuitous the RA journey remains. Just when I think I have a straight path ahead, a “boulder” drops from the sky at my feet.

That very aspect of RA is one of the most difficult to navigate. For many of us, the serendipitous nature of RA makes it so incredibly challenging to manage. I recall this being one of the most discussed topics at my RA support group meetings.

Setbacks with RA treatment and management

Of the many diseases out there, I believe this is one of the most unique aspects of RA. With many diseases, if you follow the treatment protocols to the letter, you can achieve remission or at least manage your disease. 

With RA, I have found that despite following all of the “rules”, carefully attending to all of the treatment protocols, doctor’s advice, etc., there are times when the path followed does not lead to a positive place. On the contrary, the RA journey is filled with winding, bumpy roads, making navigating them one of the major challenges of RA.

Constantly making adjustments

For instance, I am a strong advocate for exercise and movement as a key strategy for managing RA. That said, I have had to adjust what I do, how I do it, for how long, etc., more times than I can count. Just when I think I have settled on a routine, my RA body reacts, forcing me to make yet another adjustment. 

Not long ago, I had a hip flare and, as a result, it totally impacted my walking, forcing me to cut back, limit my pace, and, at one point, even stop for a period of time. To say this was frustrating is a massive understatement.

These setbacks take a mental toll

The mental toll that these bumps in the road take are hard to fully appreciate. As they add up, over time, it makes it even more challenging to keep forging ahead on the journey. 

I find myself getting depressed and fatigued and even giving thought to just giving up and letting things slide. The burden of having to stay vigilant is exhausting. I think if it did not require such frequent adjustments to our lives, it would be a lot more bearable. But the uncertainty of exactly when the road will diverge keeps me on edge and anxious.

How do we adjust to this?

So, what do we do to counter this nasty aspect of managing RA? I tend to be solution-oriented so that is how I approach this dilemma. One way to deal with this is to simply understand that this is a reality of RA and therefore, like so many other RA components, it must be addressed.

Support

First, I know that, for me, simply sharing my frustration with someone I trust like my family or my care team often gives me the support I need. They offer advice and encouragement and that is tremendously helpful. 

Moments to reflect or wallow

Secondly, I tend to reflect on the times in the past when I have navigated a similarly winding path and consider how I adapted and dealt with it successfully. I also allow myself to “wallow” for a time in the feelings of frustration, giving myself permission to be angry, upset, and overwhelmed. So often, we feel that we must be strong and steady, but allowing some time to just be in the moment is really healing. I find that it actually helps to move me forward.

In the end, there is no perfect way to maneuver the many winding paths we encounter in our RA journey but learning how to accept that they are all part of our management is the first step in accepting our own solutions.

Nan

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