Don't You Forget About Me
Having RA is hard, as all of us RA-sufferers know. One aspect that makes this disease so difficult is its "invisibility" and how this affects how others perceive and understand (or misunderstand) what it's like living with this complicated illness day after day. It's one thing when you interact with acquaintances or strangers who don't understand what you're going through. They don't really know you anyway, right? But when it's a good friendship that begins to suffer or fall apart due to your RA and your friend's lack of empathy and understanding, that's a whole other sad and hurtful story.
I fear this is what's happening to a friendship of mine with one of my good girlfriends whom I've known for several years. Both perpetually single (most of the time), and sharing the same tastes in music and movies and many other things, we used to hang out quite a lot.
We'd belt out funny songs at karaoke at one of our favorite dive bars. Or we'd go listen and dance to our favorite New Wave/Britpop/synthpop/Madchester music on Wednesday nights. Seeing bands play at First Avenue or other small venues was another fun thing we often did together.
A couple of summers ago we even took a road trip to Denver, CO to see the iconic 80s/90s shoe-gaze band My Bloody Valentine play a show in a packed theater. So much fun! Sadly these days the fun seems to be over for now. I'm not completely sure why, and we haven't yet spoken about this tension or distance that's come between us, but I have a hunch that my RA is at least partly to blame.
Most of the time I don't think I look or act like I'm sick with RA. I don't wear braces anymore (I used to wear a wrist brace), nor do I use a cane or walker or anything like that. Sometimes you might see me limping or walking slower if my right foot and ankle are flaring. But usually, I think I walk and move like just about every other able-bodied person running around in the world. It's in the privacy of my own home or somewhere else where I'm alone that I collapse onto the couch or fall into my bed--weary, beat-up by RA.
You also wouldn't be able to pick me out of a crowd and say, "Hey! She has ARTHRITIS!" I do a pretty good job hiding it, with the help of RA medications and knowing what my physical limits are to avoid flares. Maybe too good of a job is being done to make me outwardly appear to be a healthy, normal, functioning adult. In reality, I'm in some degree of pain every single day, and I have been for 18 years. Living this kind of life is far from normal.
In addition to the joint pain and swelling, extreme fatigue, episodes of depression and anxiety, and overall feelings of sickness often take over my body. Unbelievably, perhaps, is that the people who are closest to me probably know and understand the least of these health struggles. My now-distant friend would fall into that category, I'd say.
Over the last several months I've noticed that she hasn't been contacting me or asking me to do things with her. Maybe she's busy with work, I'd think. But then I'd see her posting things on Facebook about how she attended a concert with so-and-so, or she went out for drinks with another person, or she made plans to do other fun things that we used to do together.
I know it's not exactly healthy to brood over Facebook posts, but seeing the fun she was having without me was kind of driving me nuts and making me feel really bad. What the heck?What was going on? Was I just simply forgotten? Or was I left out on purpose? I'm still trying to figure this out.
A conversation we had last fall, I think, keeps flashing back to me. She was annoyed with me because she had asked me to go with her and other mutual friends to a concert that I originally said "yes" to. However, I think the day before the show I wasn't feeling well and I told her that I didn't think I'd be able to make it. She got pissed off at me and made some comments about how annoying it is that I often cancel plans at the last minute.
Yes, I can see how canceling plans on someone, and more than once, can be very annoying and frustrating. I wouldn't like someone doing that to me, of course. However, I don't cancel plans to be rude or a jerk or because I'm lazy. I honestly feel bad whenever I do it. And I hate doing it!
In reality, many times when I make plans with someone, at that moment I do feel like going out. I may feel up to going out all day long but then once evening rolls around I don't physically feel like I can handle it anymore. Fatigue sets in, pain gets worse, moods swing unpredictably, my stomach churns with pain or discomfort from the numerous medications I had to choke down that day.
However, many times I do "rally" and muster up the energy (somehow) to drag my body out the door to go do something with friends. I often push myself to go out and stay active and I think this is also something that not many people know or realize. I want to be active and socializing and doing fun things with other people! But sometimes I just can't, and there's no way to predict that.
I know that I need to initiate a conversation with my friend about our situation and try to have an honest, adult discussion about it. Procrastination is one of my best skills, however, and I've been afraid to bring it up. I don't really want to get yelled at or reprimanded or put down when I'm already feeling down. But, if our friendship is going to get better, a conversation needs to happen.
Hopefully she will be understanding of my health situation(s) and the limitations and burdens that RA puts on me. Unfortunately there will always be a "third wheel" in all of my relationships: the oppressive, demanding RA that follows me around everywhere. Yet I have hope that honest, respectful, and loving communication can help that "wheel" not be such a problem between friends.
How often you do experience an unexpected boost of energy?