People who meet me for the first time are usually quite surprised to find out at some later point that I’m a cyborg – a term that I think my replacement hip, shoulder, and knee as well as the rods and screws in my spine well qualifies me. I’ve often wondered if these prosthetics, which are implanted deep under skin and tissue, were visible if it would help people understand when I am sometimes compelled to comment that I have rheumatoid arthritis and that I’m not having a good day.
Instead, I do what I think most of us do. I pretend I feel better than I do. I show up when I’d rather lie down. I make some other excuse rather than admit I don’t feel well. I wear slacks and long sleeves to cover the surgery scars. I pretend I’m healthy when, in fact, I have a chronic disease.
Understanding an invisible disease
One of the major barriers to a general understanding of rheumatoid arthritis, I believe, is the fact that it’s an “invisible” disease. Many times, or even most of the time, people who have it don’t look sick. That and the disease is so unpredictable. Someone may be able to participate in something one day and be completely unable to do so the next.
True, some RA patients are more visible than others because they use mobility aids such as a cane or a wheelchair. (If you want to talk about being invisible, talk to someone in a wheelchair – but that’s a topic for a different post.) Some have other visible signs of the disease – swollen hands, deformed joints. But in a true “Invasion of the Body Snatchers” scenario, RA takes perfectly normal humans and replaces them with pain-ravaged, drug-dependent duplicates. And like those alien doppelgangers, RA sufferers do their best to slip through society undetected.
The power of numbers
The fact is, more than 1.5 million Americans suffer from rheumatoid arthritis and upwards of 23 million suffer from an autoimmune disease.1 That’s approximately seven percent of the U.S. population (based on the 2012 census of just over 300 million).
If we take such pains to be invisible, why is there so much conversation about making RA more visible?
Just as RA is a complex disease (or actually group of diseases), I think the answer to that question is just as complex.
The importance of visibility
First and foremost, I think most of us would like some understanding of the disease and the toll it takes on us without having to explain. Tell someone you have cancer or diabetes or heart disease and that person “gets” it. No explanation is necessary. Not with RA. And when you’re already dealing with fatigue brought on by the disease it’s hard to muster the energy for an RA tutorial.
But beyond that, visibility brings understanding and understanding brings funding. Funding brings research and research can bring a cure. It’s not just at a personal level that we need to raise the bar of awareness; it’s at a more universal level. If the public understood the toll that RA exacts – not only to the individuals who have it – but the costs in productivity and the millions spent for health care each year – it would have a dramatic effect on the search for a cure and hopefully spare future generations the pain, diminished quality of life, and potential disfigurement that we face today.
I don’t have the answer. Many of the current ads for RA treatment (which is where a lot of people get what little information they have about the disease) tend to portray the disease as something for which you can take a drug and be well. The disease is not portrayed like cancer or diabetes that require medical teams and a continuum of treatment.
But I do have faith that we will get there.
Awareness first. Then we get the cure.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?