Last summer, I was happily and unexpectedly RA-united (reunited) with my friend Mara, who also has rheumatoid arthritis (RA). We first met and became friends some years ago when she lived in Minneapolis and happened to find my blog online (Inflamed: Living with Rheumatoid Arthritis) and reached out to me. Now, she lives far away in California, sadly, but in June we were able to spend some time together again which was really fun.
It's very difficult not having good RA friends living close by - people who truly "get you" and what you're going through living and struggling with this disease. Mara gets me. But I feel ashamed that there was a period of time when I didn't fully "get" her, despite us having the same chronic illness.
Poor communication on my part
How did this reunion come to be? We hadn't talked or communicated in at least a few years, which was ultimately my fault, I'm embarrassed to say. But I think it's important to talk about what happened because it can easily happen in any relationship one has with another person, especially if at least 1 person in the relationship lives with a painful chronic illness.
Mara and I didn't have a big fight or blow-out or anything like that. The broken friendship happened as a result of poor communication on my part.
Toxic positivity sounds annoying and dismissive
I remember Mara responded to a post or comment I made on Facebook related to RA. At the time, her RA was wildly out of control and unbearably painful, making simply functioning very difficult for her. She was reacting and commenting negatively about having RA, but was also being quite honest and raw about it.
Instead of listening to her and supporting her with real empathy, I kept throwing toxic positivity at her, telling her to "hold onto hope" and to "be grateful" and other things along those lines that were said with good intentions but to her probably sounded very annoying and dismissive. It took me a while to realize what I had done and that blabbing at her to "hold onto hope" - when all she really wanted was someone to listen and understand her pain - was not being a good or supportive friend.
Understandably, she got upset and unfriended me on Facebook and we stopped talking. I didn't think I had done anything wrong at the time, yet it took being in similar situations myself during the past few years to realize what an uncaring jerk I had been. My toxic positivity wound up causing her even more pain and, for that, I'll always be deeply regretful and remorseful.
What is toxic positivity?
What is "toxic positivity" anyway? According to Verywell Mind, "Toxic positivity is the belief that no matter how dire or difficult a situation is, people should maintain a positive mindset. While there are benefits to being an optimist and engaging in positive thinking, toxic positivity instead rejects difficult emotions in favor of a cheerful, often falsely positive, façade."1
CreakyJoints has an excellent article about how to support someone with a chronic illness that also touches on the dangers of toxic positivity called "How You Can Support Someone with a Chronic Illness (and Some Real Advice on How *Not* To)" by Eileen Davidson. The following are some examples of toxic positivity comments and statements to look out for and NOT say to someone who's struggling, hurting, and in pain:2
- Everything happens for a reason
- What doesn’t kill you makes you stronger
- You just have to think or be more positive
- You’ll be fine
- You’ll get over it or get used to it
- Positive vibes only
- Everything works out in the end
- Don’t worry, be happy
- It could be worse
- It is what it is
I would add that telling someone to be hopeful and grateful constantly also belongs on the list. Unless they ask for it, most of the time people don't want advice. And they don't want to be dismissed or feel invalidated. I certainly don't, and I've been made to feel that way by some people in the RA community whom I once considered really close friends. It can be devastating and feel quite lonely to have a friend say these sorts of things, especially if they also have RA and should be able to empathize with what you're going through.
Reaching out to apologize
Luckily, regarding my friendship with Mara, I realized that I had not acted in a very empathetic, patient, or supportive manner and I decided to reach out to her and apologize for it. During those years of our "break up," I did think about her often and wondered how she and her RA were doing.
Finally, last summer, a light bulb went on in my head and I thought back to our Facebook conversation and more about what had gone wrong. I finally saw that, at the time, she was in a very painful and dark place, and my trite comments about "hope" probably made her feel even worse. So, out of the blue, I decided to email her to say "hi," and to acknowledge the way I had behaved and to sincerely apologize for it.
Maybe a couple of days passed before I received an email response from her. When I saw her email sitting in my inbox, I felt excited but also nervous to open and read it. Would she yell at me and tell me what a horrible friend I was? No, it was the complete opposite. She sincerely thanked me for emailing her and acknowledging how hurtful and dismissive my toxic positivity had been for her. She said she was happy to hear from me and that oddly enough, she was planning a trip back to Minneapolis very soon! Funny timing, right? Or, maybe it was perfect timing. I prefer to think of it that way, and I'm so happy that I decided to reach out to her.
Happy to have patched things up
Mara and I reunited in Minneapolis last June and we spent 2 nights in a row together just hanging out, laughing, and catching up. It was great! The only bad thing about her visit is that she wasn't in town very long so we only got to hang out a couple of times.
I'm very happy to say that we patched things up and I'm so grateful that she had it in her heart to forgive me. While I am all for being genuinely positive and supportive, I realize now how important it is sometimes to just be there and listen when your friend is hurting. Simply saying and meaning, "I know how it is and I'm here for you" can go a long way.
What strategy to fight fatigue is most effective for you?