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Don’t You Forget About Me

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • danandang
    3 years ago

    As the caregiver to my son (who passed away 8/2013 age 24 from complications from JRA, scleroderma & a mixed connective muscle/tissue disease) and my husband who also suffers from RA, chrones, kidney failure (brought on by a medication) – I have had this conversation with “friends”. One in particular who was quick to point out that I had become to self absorbed with my family issues. I was no longer being invited to do anything because my personal life was taking presidence over my friends. My son was 11 and very sick, the oldest was in college and the youngest in 4th grade. My husband had a pic line at the time. I was to self absorbed in my family life. I didn’t do much back then but go to work part time as a lunch lady because it was 3blocks away & I could take off at the drop of a hat when one of them needed me. It’s been 15+ years since that conversation. And I am still hurt but about 5 years ago I met a man who was also very lonely. We became fast friends! He & his wife and another couple helped me get him out of the house! We started spending every weekend together cooking. Something all of the guys liked to do!! They saved his life. The sparkle was back in his eyes because we were just Dan and Angela. We have never had better friends in all the years we’ve been together. Tomorrow we’ll celebrate our 31st anniversary. I will never apologize for being absorbed by my family.

  • RHPass
    3 years ago

    You are spot-on with this. When friends call and ask if I’d care to join on an outing, my BRAIN always says “Oh yes! absolutely!”. and then my body usually yells “What were you thinking???”. My husband (and care giver) works so hard at home and his job, I feel bad wishing WE could do something on his days off. unfortunately when he DOES ask it is usually on a not great day for me….it becomes very easy to stay secluded.

  • abbyjude2002
    3 years ago

    and sadly, I am an RN, as are 3most of my friends, so you think they’d “get it”

  • seroinflammatory
    3 years ago

    Thank you, this sums up what it’s like. I want to show your article to my family & friends with the addition that, “Yes, I have tried that and Yes, the Drs have tried that and I know that all your suggestions are coming from a place of caring but today I just give up. This doesn’t mean that I won’t mysteriously feel better tomorrow but that today I quit. I will keep going but I need your forgiveness when I can’t.

  • Jillian S moderator
    3 years ago

    seroinflammatory,
    We are so glad that you resonated with Angela’s article. It is certainly an important message to get out there and we think it would be wonderful if you shared it with your loved ones.
    Our community is always here to listen and support you- we understand what you are dealing with.
    It can be rough at times to explain life with RA to those who do not live with the disease. However, we are here to support you and encourage you to try 🙂
    I thought you might enjoy reading this compilation of community thoughts on what you wish more people knew about RA:
    https://rheumatoidarthritis.net/living/community-thoughts-wish-more-knew/

    Additionally, here is a video of one of our RA moderator’s, Tamara, discussing the same topic!
    https://rheumatoidarthritis.net/video/ten-things-i-wish-everyone-knew-about-ra/

    I hope you enjoy and we look forward to hearing back from you soon.

    Warmly,
    Jillian (Rheumatoidarthritis.net Team)

  • Blovely
    3 years ago

    This is exactly how I feel and it really prevents me from making any kind of commitment, even with my kids.

  • Jillian S moderator
    3 years ago

    Blovely,
    Thanks for your comment.
    I am glad that this article resonated with you and I hope it reminds you that no matter how tough things get, you are not alone.
    Many community members express the frustrations they feel about not being able to commit to family and friends. However, you ultimately need to care for yourself before you can care for anyone else. Sometimes reminding yourself of this can help.
    I wanted to share a few articles that I think you might enjoy!~

    Balancing Family & RA: https://rheumatoidarthritis.net/living/balancing-family/

    Invisible Illness, Invisible Friends?: https://rheumatoidarthritis.net/living/invisible-illness-invisible-friends/

    We hope to hear from you soon 🙂

    Warmly,
    Jillian (Rheumatoidarthritis.net Team)

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