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To Be or Not to Be (In)Visible

I’ve written before about RA being an invisible disease and the challenges that can bring. I have recently had an immersion course in the “visible” side of illness.

I live in Dallas, but I’ve lived in several different states and have been fortunate to travel extensively. I can therefore tell you with some authority that people in Texas are some of the nicest, friendliest people you’ll ever meet. Seriously, you can make three or four new BFFs while you’re thumping melons in the produce department of your local grocery store.

About a month ago I had to have some Achilles tendon surgery that requires me to wear a (horrible, heavy, hot, uncomfortable, ugly) surgical boot for several weeks. The other day I popped into the store to grab something to put on the grill for dinner. The time it took to leave my car, shop, check out and return to my car was somewhere less than 15 minutes. During that time I had no less than five different comments about my boot. Three were from other shoppers, including a gentleman in a wheelchair who was wearing his own boot. One was from the checker who offered to get someone to help me to the car. The fifth was a double-whammy from a mother/daughter combination that had parked next to me in the parking lot.

Granted, a lot of this was just Texans being friendly and was really no more than a conversation alternative to talking about the weather. Most of the time this has happened the comments have come with a generous dose of empathy from people who have in the past had the opportunity to be in a surgical boot of their own.

The comments that make me grind my teeth are the questions from total strangers asking me what happened. These questions make me skip a beat, remind myself I am a Southern woman with a inbred commitment to be polite, then answer with a smile and something bland while I keep on walking.

(I have to admit though, the creative side of me wants me to tell them that while I was paraskiing in the Alps the bindings broke on my skis and I tore six tendons in my ankle, broke two small bones, was saved by a Saint Bernard subsequently to be air lifted to a clinic in Switzerland where I met an amazingly handsome, rich doctor that I married in a fit of passion. Storytelling is, after all, just as much of Southern culture as good manners.)

But all this recent attention has me once again pondering the visible/invisibility side of RA.

I have often wondered if people could see my artificial knee, hip, and shoulder along with the titanium screws helping fuse parts of my spine together if they would be more helpful and understanding when I need some help. But after the recent weeks of an almost relentless barrage of questions and comments (albeit well-meaning), I am coming down on the side of being invisible.

I think that fellow contributor Kelly Mack’s recent article entitled, Not Your Teachable Moment” expressed it quite well. As Kelly discussed, I think most of us are willing to answer respectful, appropriate questions (if there is such a thing from a total stranger), but we are not on call to explain ourselves to presumptive strangers who make our illness their business to satisfy their curiosity.

So where does that leave us in this conundrum of being caught wanting more understanding but less visibility?

To me the answer is in the difference between visibility and awareness. While I personally don’t want to be more visible, I do want people to be more aware of rheumatoid arthritis and the challenges it can pose to those of us who have it. Awareness brings understanding. Understanding can bring funding and funding can bring better treatments and eventually a cure. So while I don’t necessarily want everyone to “become visible” about their RA, I encourage everyone to do what you can to build awareness of the disease. Support research, participate in a walk, “celebrate” Arthritis Awareness month. All of this matters.

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


  • Wren moderator
    4 years ago

    I get the visible/invisible conundrum. I’ve never minded comments from well/able strangers when my RA has manifested in a visible way as they’re almost invariably friendly, compassionate, and sometimes, helpful.

    What I DON’T like is when I get a doubtful (and sometimes dismissive) “Oh, my grandpa has that,” meaning grandpa has osteoarthritis, not RA. Or “Have you tried gin-soaked raisins?” or one of the many, many variations on that theme, as if I’ve never thought to research and try “natural” cures.

    As a result, I rarely say much, myself, to people I encounter who’re walking around with a boot on an injured leg, etc., unless I see them struggling with their groceries or something. And then I offer to help. Politely.

    I think we all need validation and compassion when we’re in pain/ill/fatigued and coping the best we can with this mostly invisible disease. But because it can’t be seen, I’m not sure how we get that. And like you wrote here, Carla, I believe the best thing that can happen is for the world to be more aware that rheumatoid disease exists and that there’s not nearly enough research being doing on new treatments or to find a cure. I’d much rather hear a curious stranger say “Where can I donate to help cure this disease?” than “Have you tried wearing a copper bracelet?”

    Great article! 🙂

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