Expectations: Realizing The Isolation Felt With Having RA
Having RA is isolating, and that isolation hurts. It really does. It’s not that everyone has to hear about how I deal with RA and understand it; in reality, only people who have RA can access and understand the pain we go through. It’s just that I have become more aware of the ways in which the life I am leading at this moment is so very different from those around me.
Between the specialty medications structuring my calendar to fatigue and joint pain slowing down my days, RA has separated me from my peers. And I want to say that that isn’t a bad thing, but I’d be lying.
My life with RA is different from that of my peers
I never quite conceptualized how painful that separation was to me until writing this article now. One additional factor that might be impacting my feelings is how uncommon RA is for people my age. Being 22 (almost 23 now!) and having chronic, inflammatory arthritis is supposed to be oxymoronic. This isn’t supposed to happen.
And talking about it and explaining it is really difficult because you have to walk this fine line between being vulnerable and recognizing that most people outside of your closest friends don’t really care about your RA.
Should I talk to others about my RA?
Who should know about my chronic illness?
I say that not to be mean but to genuinely ask: why should a random stranger care that I have this chronic illness? I used to think that everyone had to know about my condition and how I was doing but now I recognize that that is naïve and too trustworthy.
Managing my expectations when I talk to others about my RA
Something else I’ve realized in talking with people about my RA is that there isn’t really much they can say to comfort me, and that it’s wrong for me to place that expectation on someone when I divulge how I’m feeling. Instead, I need to give that validation to myself, to help myself not to feel so isolated. Expectations are premeditated resentments, and it’s time for me to let go of my own resentments toward my condition.
How do I keep my expectations in check?
At the same time, it’s one thing for me to write that sentence and to actually carry it over into my lived experience. Reconciling the expectations I place on myself and others first require a self-awareness of both my RA and how I’m communicating about my RA. For many other reasons, this is partly why I like to journal about how I’m doing with RA so that I can keep myself and my expectations in check.
People without RA do not understand RA
Moreover, I’ve seen many community members write that other people who don’t have RA will never know what it is like to have this condition, and this is absolutely correct. People without RA won’t understand the flares that we have, the pain that we feel, the difficulty of dealing with RA-specific specialty medications.
Quite frankly, I don’t want them to know. I don’t want them to have personally experience the pain that we go through, mostly because I don’t wish this disease on anyone! It’s horrible. It’s been the most difficult thing to deal with in my short 22 years of existence. And, no, it’s not okay that RA is in my life. It just is in my life now. That’s one expectation I am likely to keep.
After the past 2+ years, how do you feel about telehealth appointments to manage your RA?