Tales from an RA Veteran

When I consider that I have been journeying with RA for a quarter-century, it seemed only fitting to spend some time sharing my thoughts as an “RA veteran”.

I refuse to let RA define me

One of the more interesting observations is that RA has not defined my life. Rather, I have learned to weave it into my life, not dominate it. Early on, I thought my life would entirely revolve around the disease in every area of my life. I think my innate stubbornness paid off when it came to RA. I was not about to let anything rob me of my career, social connections, hobbies, etc. How, you may wonder? It is all about resilience and perspective.

I quickly realized that if I did not determinedly work to come up with a plan to manage RA, it would conquer me. That led to collaborating with my new care team to develop a treatment strategy. From there, I could mentally adapt and make the necessary adjustments and modifications that would allow me to live a joyful, productive, and satisfying life. So instead of tennis, I now play pickleball. Instead of running, I do Tai Chi. Instead of working out in a gym, I work out in a pool. I know when to say no to invitations and activities that will be problematic for me, depending on my current RA status. These insights have proven invaluable.

Coping with the unpredictability of RA

Over the years, I have learned that nothing about RA is static. Rather it is the single most serendipitous and changeable aspect of my life. But knowing that is the key. It does not surprise me anymore if I get a flare for no reason. It does not surprise me anymore if a treatment abruptly fails. It does not surprise me anymore if someone does not understand the reality of RA. And the list goes on. That said, having that knowledge makes it less jarring and allows me to cope with the chaotic nature of RA. Just another insight that has come with years of RA management.

Taking my time with new decisions

Another veteran insight is that I devotedly avoid going down the rabbit hole of “what ifs” and farfetched but appealing solutions. It is tempting to turn to new, and yet totally unproven, approaches to RA. However, there are many dangers inherent to this, physically, psychologically and emotionally. The psychological disappointments can be overwhelming and the obvious medical risks are a significant concern. I have learned that trying anything new, like medications or exercises, must be carefully researched, reviewed and considered before I implement them. This has saved me in numerous ways over the years.

In some ways, I'm grateful for RA

Being a veteran has given me insights into chronic disease in general. This has expanded my empathy to so many other people whose lives I likely would never have been connected with. I can now relate on so many levels with others who face similar challenges and could use a friend, an ear, or a helping hand. That has enriched my life in ways I never imagined. I have become a friend, confidant and mentor to some wonderful, caring, interesting individuals. I will forever be grateful to RA for that.

Finally, the hindsight of veteran status has afforded me the opportunity to reflect on my RA journey and I remain grateful to everyone who has accompanied me or simply encountered me on this trip. Each and every one of you has been instrumental in my management and is responsible for any success I have enjoyed.


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