In my experience, one of the most insidious things about rheumatoid arthritis (RA) is that it’s an invisible illness. This means that even though you have RA and your body may be in a constant state of fighting with itself, people might not know about your battle just by looking at you.
This is difficult because even if you’re feeling horrible, you might look fine at the same time. In turn, people may dismiss your pain and your difficulties, simply because you don’t “look” sick.
Several tags on social media — #invisibleillness and #invisibleillnessawareness — are helping to raise awareness about this issue.
Here are a few reasons why they matter to me and other people with RA:
These tags allow people who are living with a chronic condition, like me, to share openly about our illnesses and help to show others that just because we don’t look sick, it doesn’t mean we aren’t struggling. What you can’t see can hurt you. And what other people can’t see can mean that you have to constantly fight for legitimacy: You have to prove that you are sick on the inside because you look fine on the outside.
These tags allow people with RA to build community and join with others who have RA to bond over common experiences. Sometimes it’s difficult to put into words what we’re going through, and seeing the experiences of others can help us describe our own reality of living with RA.
Because these tags are not unique to the RA community and cut across many illnesses that are invisible, using these tags can help those in the RA community make connections with those who live with other chronic conditions. For example, the tags are also commonly used by people who live with diabetes and Crohn’s disease.
Over the years, I’ve learned that despite having different illnesses, the chronic illness experience and the experience of living with invisible illness is similar, no matter the illness.
Since my diagnosis, I’ve been living with RA for at least 11 years. Over that time, these tags have provided the opportunity not only to share, but also to chronicle the experiences I’ve had.
It’s hard to keep track of all of the procedures I’ve had, all of the treatments I’ve been on, and all of the minutiae along the way. But by providing an open forum, these tags can also provide a useful way to look back at what I’ve been through over time.
These tags give those outside of the chronic illness community a window into what our lives are really like. For example, those in the medical profession and the pharmaceutical industry can follow these tags to get an idea of what it’s like to live with an illness like RA. While people in these sectors help to treat illness, they often don’t understand what it’s like to live with the disease or how treatments impact our lives.
It’s common to hear people talk about how social media has taken over our lives — often in a negative way. But social media has made a huge difference to those of us who live with chronic, and especially invisible, illnesses. It’s truly amazing the ability that social media has to connect people and the resources it provides.
If you’re living with RA or any other invisible illness, you might find these tags helpful. And if you haven’t used them yet, check them out and give them a try.
Leslie Rott was diagnosed with lupus and rheumatoid arthritis in 2008 at the age of 22, during her first year of graduate school. After being diagnosed, Leslie went on to earn a PhD in Sociology from the University of Michigan and a master’s degree in health advocacy from Sarah Lawrence College. She authors the blog Getting Closer to Myself, where she shares her experiences coping with and living with multiple chronic illnesses, candidly and with humor. She is a professional patient advocate living in Michigan.