Anyone who lives with an invisible health challenge, from rheumatoid arthritis to anxiety to brain injury, has most likely encountered some difficulty in explaining their condition due to it’s invisible nature. Here are my top four tips for explaining your invisible illness to friends and family.
Tip 1: Share a “What You Don’t See” Photo
I was first inspired to share my “What you don’t see” photo when I saw another invisible illness warrior share hers on Instagram. #whatyoudontsee photos have been very powerful in simply, quickly and elegantly showing people that it’s possible to look “fine” on the outside yet have substantial health challenges on the inside. I encourage you to share one as well!
Tip 2: Share a photograph or video of your medications
The first time I saw someone photographed with their medications, I was immediately struck by how they “didn’t look sick” yet the medications told another story. Unfortunately I didn’t save the photo, but I can see it in my memory: a woman was laying on a couch and all her medication bottles / syringes were on the floor in front of the couch. She looked totally “healthy” but the medication bottles immediately demonstrated that looks can be deceiving!
If you’re comfortable doing this, I encourage you to film or video you and your medications. When I hired a friend to photograph an “invisible illness photoshoot,” I was shocked by the responses I got from the photo of me with my medications for a year. People who’ve known me for decades said they didn’t recognize how serious it was until they saw the photos.
Many other patients share their injections, infusions and medications in photos and even videos on social media to quickly and effectively share this aspect of their chronic condition with others. Check out the hashtag #injectwithme on social media too!
Tip 3: Choose Your Words Wisely
The words we choose can have a huge effect on how seriously others will take the condition. For example, “rheumatoid arthritis” is often perceived as synonymous with minor aches and pains from osteoarthritis, when in fact it is a much more serious and systemic condition. Therefore, I sometimes call it “rheumatoid disease” or “an autoimmune disease.”
In the Rheum to THRIVE course and support groups, we discuss different way to explain your condition and many past members have shared that they also like to avoid the word “arthritis” and focus on the fact that they have an autoimmune condition, or simply “chronic illness.”
Tip 4. Use Metaphors for tricky symptoms like fatigue
Fatigue is one of the more invisible symptoms of rheumatoid arthritis. I find it helpful to use metaphors or analogies such as that my body has “low battery” or I’m “low on spoons.” The Spoon Theory was originated by Christine Miserandino in 2003 on ButYouDontLookSick.com. It’s a way to use “spoons” as a metaphor for energy units.
I sometimes also find it helpful to relate autoimmune fatigue to something the person might have experienced before, such as fatigue from the flu or another infection.
Want to delve deeper?
I delve into much more detail into how to manage relationships and social life with invisible, chronic illness in my self paced “Rheum to THRIVE” program, see all the details here!
