By D.Z. Stone
Rheumatoid arthritis (RA) is not easy to describe. How does one explain a chronic and progressive autoimmune illness that typically affects the small joints of the hands and feet but may also involve other joints as well as inflammation of the lungs, heart, and eyes? A disease where one can suffer the most severe pain imaginable—yet appear perfectly healthy on the outside? An illness so misnamed that many people assume it is simply the wear and tear of old age? CreakyJoints asked its online community via Facebook how they explain RA to friends and family.
Indeed RA is so difficult to explain that a majority who responded said they don’t even bother trying.
After 41 years with the disease, Carolyn Jenkins says, “I’m all out of talk; I don’t explain myself to anyone and only discuss RA with my doctor. If anyone asks me how I am, I smile and just say, ‘Fine thanks, and you?’”
Gibber Jabb agrees that attempted explanations are futile: “Ha, I’m still trying to get through to docs, never mind others.”
Among the CreakyJoints members who have given up trying to explain RA, half have done so because they felt misunderstood, while others gave up for fear of sounding like chronic complainers.
Karen Harmer stopped talking about her RA after she realized no one was listening: “If I mention anything to my mum, all I get is her ailments, so I don’t say anything anymore. I’m sure that everyone has their own problems, and the last thing they want to do is listen to mine.”
Jeanette Rochford-Warrington also takes the stiff-upper-lip approach: “No point moaning on about it. We’re women and will cope one way or another.”
Lyn Myers thinks the root of the communication problem is a lack of empathy: “If they haven’t experienced chronic pain and fatigue, they don’t understand. So I just don’t talk about it anymore.”
Nicole Belval shares that sentiment: “I don’t unless I have to. Then I try to be brief because people really don’t understand nor do they care to.”
Despite the myriad communication problems, there are still those who persevere in the struggle to find the right words to explain RA.
Rosa Linda Valencia: “I often have to explain that this is not the same as Grandpa’s arthritis.”
Reneé Scarborough: “I was diagnosed at 20, and the best explanation I can offer is that my body’s immune system shoots first and never gets around to asking questions.”
Claire Cotton says she finds it helpful to share the “spoon theory,” a popular analogy to explain how one rations energy (spoons) to live with chronic pain, to help others understand her day-to-day reality. The analogy, developed by writer, blogger, speaker, and lupus patient advocate Christine Miserandino (ButYouDontLookSick.com), describes how a person gets a certain number of spoons for the day, each representing a ration of energy. Using spoons to represent rationed energy, she says, can help “people grasp how hard things can be when one day you seem fine and the next you can’t get out of bed.”
Kelly Johanneson Clayton prefers a more no-nonsense, nuts-and-bolts explanation: “I inform them that the disease essentially causes my body to attack itself, resulting in pain and damage to my joints and potentially to my organs. I’m constantly fatigued from it and have good days and bad days.”
For Amelia Milz Mildred Patrick, having a member of her medical team talk to her family and friends was beneficial: “The occupational therapist talking to all of us as a family really helped, especially her explanation to my kids, my friends, and mum.”
Looking to Explain RA? Here’s What Leading Arthritis Writers Say.
CreakyJoints bloggers are the world’s premiere group of patient leaders writing about arthritis. We asked them how they explain rheumatoid arthritis to others. Here’s what some of them had to say.
Kristin Andersen: The bottom line is that it is up to you to control the message and decide who should know about your condition. I have learned to segment my friends and family into tiers: those who can know and may be interested in knowing the specifics of my disease; those who should know in general terms that I have a chronic illness (and perhaps the name of my disease); and those who don’t need to know at this time.
J.G. Chayko: RA is not a breakdown or “wearing out” (like osteoarthritis). My immune system, which generally works to protect against virus or infection, thinks my joints are an infection and attacks them, which results in fluid buildup, inflammation (swelling), and pain. If the inflammation is not controlled, joint damage occurs.
Layne Martin, RN: I have psoriatic arthritis and I find it very challenging to explain to family and friends, as most people have never heard of it. It wasn’t until professional golfer Phil Mickelson started doing television commercials for the drug Enbrel® [etanercept] that it became somewhat known. When someone does ask about it, I simply say it’s a lot like rheumatoid arthritis in that it causes joint damage, but it also includes an itchy, flaky skin rash (psoriasis)—and it’s often referred to as a double whammy!
Katherine Macfarlane: I used to tell people that I have “arthritis,” but I stopped doing that and now explain to anyone that I’m telling for the first time that I have “rheumatoid arthritis, a disease that’s a lot like lupus.” Even if this generalizes too much, it does help people understand that I’m talking about something serious and something systemic.
Julie Mills: As a college student, it is an interesting thing to have people learn you have rheumatoid arthritis. I remember doing a research article just last year about athletics and RA in my sports conditioning class. The second I told the class that I was interested in this subject because I have RA, every eye was on me. It was as though I was suddenly a unicorn. People don’t always understand that this disease affects people of all ages.
Rick Phillips: I view any interaction as a way to educate my family. I try to keep in mind how I feel when they have something. There is no way I know how they are doing unless I ask. It’s the same with me. I cannot expect them to know how I feel unless they ask, so I try to be positive when they ask questions or make assumptions about my health.
Leslie Rott: It’s hard to get anyone who isn’t sick to understand the daily ins and outs of the disease, and I wouldn’t wish this disease on my worst enemy, let alone anyone I am close to. But I try to explain the general feeling of being unwell and the degree to which I am in pain on a daily basis, even if I don’t explicitly share that I am in pain the majority of the time.
Jennifer Scheid, MD: For me it was a frustrating process just getting to the diagnosis, as the presentation was unusual and indolent. Not only did I have to find a way to tell family and friends, but also my co-workers, administration, chairs of committees on which I served, and my patients. I am a physician, and plenty of my patients were upset at delays in their care or having their appointments rescheduled several times, so I had to say something to get a little bit of a pass from them. I know I lost patients, too, but being honest with them, the majority stayed on. Luckily, I had support from my staff and advance practice (NP, PA) colleagues. I would not have been able to continue working if not for them.
Katerina Birge: To my “other” (meaning non-Mexican friends and family), we have learned it is best to be very open about it and how I am actually doing (not just wanting to feel); the result of this approach is that communication and encouragement on all ends (including my fabulous rheumatologist) are open and clear. With my Mexican family and friends, there was never a need to explain—family and friends jumped in and took over doing things for me. Most days this is an awesome help with logistics and practical needs: groceries, books, pharmacy. However, I realized that if I want to be able to have my own family and be independent, I cannot be relegated to this role. We are still negotiating this.
D.Z. Stone is social media and editorial director for CreakyJoints, the nonprofit arthritis advocacy organization and popular online community with more than 76,000 members. Stone has published numerous articles in the mainstream media, including the New York Times and Newsday. To become a registered member of CreakyJoints and connect with others, receive the latest arthritis news, and participate in patient-centered research—all for free—go to creakyjoints.org.