Editor’s Note: This article is a part of an Op-Ed series, “Second Opinion,” where patient experts and health writers share their take on current research, news, and trends in health and medicine. The views expressed in this article do not reflect the opinions or views of HealthCentral.com.
“There is no way he has RA.”
That’s a paraphrase of a reaction on the RAHealthCentral Facebook page to a post showing Emil DeAndreis doing a modified yoga pose. It was not the only disbelieving comment on that post and Emil is not the only physically active person with rheumatoid arthritis (RA) who has been the target of such comments. Many who are in remission are judged similarly by others in the RA community, the target of derisive and downright mean comments.
And it hurts. It is painful to the people who are being judged - extremely painful, in fact - as you can see from the quotes included in this article. Aside from that, it also hurts the RA community when some of us are scrutinized by our own, and dismissed and excluded from the support that they need just as much as anyone else.
We all have something in common: RA. We know what it’s like to feel the throb of your heart in your wrist as the pain pulses within. We remember the feeling of walking on knives - pain like that endured by the little mermaid in Hans Christian Andersen’s story. We know what it’s like to cry yourself to sleep and then cry yourself awake in the shower. We know what it’s like to have to cancel plans yet again, to feel like a burden, and to worry endlessly.
This and so much more is something we all share, despite what we look like or how much money we have. If we are in remission, somewhere inside is the panicked thought of it all coming back. If we can run, it is with the awareness that the joy of physicality can be taken away. If we are employed, we worry what will happen if RA invades our workspace.
All of us have stories of being judged by those who don’t understand what it’s like to have a chronic illness. There is the censure that can escalate into abuse if your disability is invisible and you use an accessible parking spot. There is the micro-aggression of someone yet again equating the occasional twinge of osteoarthritis in a knee with an autoimmune disease. There is the sneer if you take the elevator instead of the stairs.
We offer support and sympathy to those who have gone through this again and again. And then we take to social media, incensed at the judgment, lack of understanding, and lack of willingness to listen.
That anger is justified. Too many in the able world make snap judgments about others who look perfectly healthy, but really aren’t. It is both a blessing and a curse that RA is becoming increasingly invisible, as new treatments prevent the deformities and the inexorable journey toward a wheelchair that happened to most of us in the past. It’s something that so many of us struggle with regardless of level of how affected we are by RA - how do you explain autoimmune disease? How do you explain an invisible illness? So we seek solace in the RA community, knowing that we will be safe among those who understand.
But some of us haven’t been safe here. I’ve spoken to many people with RA who have responded to the medications or whose condition is fairly mild and very invisible. I was shocked to find that so many of them shared stories of having their experience dismissed - their RA doubted and their right to belong denied.
The more I thought about it the more I realized that I understood both sides. Because of course I wish that I could run or work full-time or have children. Of course, I wish I didn’t have to use a wheelchair and that every joint in my body wasn’t deformed. And oh, do I wish for a body that isn’t wracked with pain every minute of the day.
I am, to be perfectly honest, at times wracked with envy, as well.
I suspect that the disbelief and the judgment originate right there. In the inevitable envy when seeing a body that works so much better than your own. There’s nothing wrong with that - it’s hard to live with limitations. Sometimes we lash out, because anger is easier, less soul-destroying than the grief tsunami that washes over you when the loss of who you were is staring you right in the face.
But that’s where my understanding stops. Because anger and grief does not make it okay to attack a person who is just living their life in the best way they can. Especially when that person shares something that is really essential to who we are: RA. There are so few of us out there and we all need understanding and empathy.
Here’s a different way to look at this: Whenever I see a picture of someone with RA who are able to be athletic, I rejoice. Because I see those in our community who are more able as a symbol of hope. I grew up with RA in a time when there were no treatments and my body is, to be frank, a bit of a twisted mess as a result. Whenever I see someone who has the ability to run, to climb mountains, to have children, and to live so close to healthy, I see a miracle. The miracle of treatments that work. The potential for more treatments that will help all of us. I see the journey toward a cure for RA coming ever so much closer.
I want them in my community. I want them to advocate for us all, to show the world what is possible. Together, they and those of us who are harder hit, provide living examples of why we need more funding for research and more attention and awareness.
We are different sides of the same coin. Inseparable.
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Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.