When I was diagnosed with Rheumatoid Arthritis at 20 years of age, the hardest part wasn’t the pain, fatigue, overwhelm from learning how the medical system works, or difficult medication decisions.
The hardest part was figuring out how to explain what the disease actually was (and wasn’t) to friends, family, teachers, and other important people in my life.
Those of us who live with chronic, invisible illnesses are often told by others that we “don’t look sick,” or that it can’t be that serious because it’s just “arthritis.” The word “arthritis” to the lay person means an injury-like condition that affects one part of the body (like one finger joint), whereas Rheumatoid Arthritis is in fact a full body, systemic disease that is much more serious than arthritis suggests.
Over the last seventeen years of living with rheumatoid arthritis, I’ve experimented with different ways to explain the impact of Rheumatoid Arthritis beyond joint pain to the important people in my life. These are the strategies that worked best for me:
“Show, don’t tell” through photography and other creative methods
As a writer, the concept of “show don’t tell” was drilled into my head from a young age. When I started connecting with other patients on social media, especially Instagram, I found myself incredibly moved by their creative photo projects where they showed the viewer visually what life with their condition was like, rather than merely telling them in words.
When I collaborated with a friend and professional photographer to create my “Invisible Illness Photoshoot,” I was so heartened to see peoples’ positive responses. Even friends who’ve known me since I was a child and whom I thought understood my condition said, “Honestly Cheryl, I really didn’t ‘get it’ until I saw the photos.”
You don’t need to hire a professional photographer like I did — you can use a cell phone camera and free apps to do your own invisible illness photoshoot or participate in different campaigns such as #WhatYouDontSee, which involve putting in writing the effects of your illness that someone doesn’t see when they look at you.
Develop an “elevator speech” for your condition
An elevator speech, or elevator pitch, is a very short explanation you can use as a default way to explain your condition. The idea comes from business, where people learn to “pitch” their ideas in short, simple terms (as if you only have an elevator ride’s worth of time to do so). I have practiced my elevator speech so that I don’t get off topic or ramble for too long when someone asks me about living with RA — I usually have so much to share that I can get overwhelmed! In my elevator speech, I mention that it’s autoimmune, affects my whole body and not just joints, and involves fatigue as well as joint pain.
Share specific patient stories
Similar to the “show don’t tell” advice with photos above, it can be so powerful for people to access first person narratives of other patients with the same condition. Sometimes seeing someone else’s story helps a friend or loved one understand the disease in a different way than seeing how it affects you. You can find many patient stories on social media or on different nonprofit websites, such as the Arthritis Foundation.
Control the controllable
This is something my old soccer coach used to say! In this case, I try to remember that I can control what I say and how I say it, but I can’t really control whether or not someone is going to be open to what I’m saying. Sometimes, the person you’re communicating with is simply determined not to understand, or they don’t care to take the time to understand. That might simply be out of your control and your time might be better spent on other things than trying to convince this person that you’re actually sick.
Living with an invisible health condition can be a surreal experience. You look “healthy” on the outside, but on the inside you may be experiencing significant discomfort. It can be difficult to explain what you’re going through, but I hope that these tips can be helpful. Let me know any more tips or ideas that have worked for you, you can find me on Instagram at @Arthritis_Life_Cheryl.
All photos below are part of Cheryl's Invisible Illness Photoshoot by Jessica Keener Photography.