Welcome to Tissue Issues, an advice column from comedian Ash Fisher about connective tissue disorder Ehlers-Danlos syndrome (EDS) and other chronic illness woes. Ash has EDS and is very bossy; having an advice column is a dream come true. Got a question for Ash? Reach out via Twitter @AshFisherHaha.
Dear Tissue Issues,
I was recently diagnosed with fibromyalgia. It’s a relief to finally know why I’m in pain all the time. My friend (let’s call her Sarah) also has fibromyalgia, and shares a lot about it online. Whenever I’ve reached out to her for advice and commiseration, she interrupts me and “one-ups” me with her much worse symptoms and reminds me she’s mostly bedbound, while I still work full time. It makes me feel like I’m being dramatic and like I should just shut up about my problems. Should I talk to her about it?
— Feeling Like a Fraud
Dear Feeling Like a Fraud (but Who’s Absolutely Not a Fraud),
First of all, I’m glad you got a diagnosis and explanation for your chronic pain. I hope you start to get some relief and healing.
Now to the issue of your friend Sarah. I’m so sorry that when you reach out to her, you end up feeling invalidated about your own symptoms. That sounds frustrating and demoralizing. I obviously don’t know Sarah, but I doubt she’s doing this intentionally or with malice.
To me, it sounds like what she’s really communicating to you is, “I’m not able to support you right now.”
We humans — being the mere mortals we are — are often not great at directly expressing what we mean or need. It sounds like Sarah is having a very rough time, and likely grieving for her old life before her symptoms forced her out of the workforce and into bed.
This doesn’t mean Sarah is a bad person; it simply means Sarah isn’t a good option for support right now.
Your diagnosis and your symptoms are real.
Please read the previous sentence again, slowly and aloud: Your diagnosis and your symptoms are real. Your pain is real, and you deserve acknowledgement and support.
Even if your case is less “severe” (or however you or Sarah want to categorize it), it doesn’t mean you have to shut up about it. It just means you need to find a different source of support.
Sarah has made it clear — albeit indirectly — that she can’t show up for you right now. So, meet her where she’s at, and take a break from reaching out to her for commiseration or advice.
Do you have any other friends with fibromyalgia or similar chronic illnesses you can reach out to? Have you tried online support groups? Try searching for fibro groups on Facebook and join a few. Check out the fibro subreddit, which has nearly 19,000 members.
Test the waters by posting if you want, or simply read what others have to say. You’ll likely determine pretty quickly which groups are valuable to you (and which aren’t).
I guarantee there’s an online space for you where you’ll feel welcomed, comfortable, and supported. It may take some research and patience to find it. Hopefully, you’ll eventually make some friends with whom you can commiserate.
Have you shared your diagnosis with friends and loved ones? You may find you already know others with fibromyalgia.
Fibromyalgia is a long-stigmatized disease that’s still dismissed by many doctors and laypeople as “in your head.” As a result, some people are careful about sharing their diagnosis, because they don’t want to be judged or lectured.
If you put out some feelers, you may find you have more friends who share your diagnosis than you think.
Though there are times it can seem that way, chronic pain isn’t a competition. I truly believe in my heart that no one is intentionally trying to invalidate others’ pain or “beat” anyone else by being the sickest. We’re all trying our best to navigate this stressful, busy, exhausting world.
Sometimes we’re unable or unwilling to express that we’re suffering too much to hold another’s suffering. I hope you’re able to find solid support soon. And I hope you and Sarah are able to figure out how to be friends without either of you feeling bad about your friendship. I’m pulling for you.
Ash Fisher is a writer and comedian living with hypermobile Ehlers-Danlos syndrome. When she’s not having a wobbly-baby-deer-day, she’s hiking with her corgi, Vincent. She lives in Oakland. Learn more about her on her website.