Feeling Alone with My RA
Over the decades that I’ve lived with rheumatoid arthritis, I’ve learned to straddle 2 realities. One reality is my daily life, where I structure my days so I can best manage pain/symptoms while trying to keep up with what needs to get done. The other happens when I spend time with people who don’t live with chronic illness and don’t see my daily ups and downs.
When I have periods of time without those visits, I can start to forget just how needy my body is. But then holidays or family/friend get-togethers happen and the mirror starts to go up, showing me how much RA dictates the way I live my life and how much I miss out on.
Navigating the challenges of RA
My life with RA has never been carefree, and over the years, it has become less so. My body requires a lot more rest than it used to. I can get away without a nap for a day or 2, but then the fatigue and pain rise too much. When I’m on my own or with my boyfriend who sees me every day, it’s not as big of a deal because we have adjusted our lives together over time, and he knows how my body reacts to different things almost as much as I do.
The isolation of social situations
It’s when I see people who haven’t been in my orbit for a while -the family I see once a year or the annual cousin reunion- that the differences in my life become starker. For a long time, these visits would make me quietly depressed and I would feel resentful inside about all of the ways I couldn’t join in the fun.
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View all responsesSometimes, that resentment would make me lash out at family if they were talking too loud late at night, or happily going skiing without me and stepping around me blithely as I limped down the stairs in the morning. That would lead me and everyone around me to feel worse, so I would try to slap on a smile even when I felt miserable which only made me feel worse. For a long time, I felt like that was the best way to get through these times, but I would always come back home feeling emotionally beat up.
Finding support and building a fulfilling life
I think what changed for me was finding someone who understood my limitations and didn’t try to convince me I could change them in some way. It's also nice having a couple of friends who walk in similar shoes and “get it.” Having my boyfriend in my life gives me the strength to buffer myself emotionally when I am in a family or friend gathering and I start to feel isolated and alone in my experience.
I think that rheumatoid arthritis can really beat a person down in social situations. Having an anchor whom you can bounce your feelings off of can help a lot when you find yourself feeling alone in a room.
Coping with comparisons
It is inevitable to have challenging feelings when you are with the people you grew up with because you will probably compare yourself to those people more than others. Besides having some others whom you can talk to about those feelings, I’ve found that building a life that is as fulfilling as possible in a conscious way helps as well.
That way, when you find yourself comparing yourself to your loved ones and coming up short, you can immediately remind yourself how the life you have built is just as valuable and rich, even if you need a 2-hour nap every day!
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