November 4th, 2015

Rheumatoid Arthritis: Finding Words to Describe an Invisible Illness

By Editor

You look good but feel bad. How do you explain RA to others when you don’t look sick?

By D.Z. Stone

Rheumatoid arthritis (RA) is a painful, chronic inflammatory disease that can damage joints throughout the body but often has little impact on patients’ outer appearance— leaving them looking healthy but feeling sick. Women living with RA recently discussed the challenges that this aspect of the disease poses, along with strategies for educating friends, family members, and co-workers about what it’s really like to live with RA, via the CreakyJoints community on Facebook.

The consensus among the women sharing their experiences was that the reality of RA is not easy to explain. “People usually have no concept of what RA is,” writes Stephanie Lewis.

Roberta Homiski agrees, adding, “They can’t see it, so it does not exist.”

But while often not apparent on the surface, the symptoms of RA are very real and often debilitating. Fatigue, which many patients experience on a daily basis, can be especially challenging. Janet Kesl Vorwald likens the experience of fatigue to what others may associate with the flu, a comparison many CreakyJoints members echo. In trying to explain her fatigue to others, she sometimes says, “You know how tired you are when you are sick with a cold or the flu? That’s what I feel like all the time.”

Pain, another common symptom of RA that is not outwardly visible, can become excruciating during a flare, or sudden worsening of symptoms. Women describe pain variously when trying to offer others a clear sense of what they feel.

For Carmen Tita, the sensation “feels like someone drilling on your joints.”

Pat Fogarty Volker says, “I feel like I have been run over by a truck.”

Elinore McNutt: “Hit by a car.”

Gina Mara: “I’ve fallen from a 20-story building and I can’t get up.”

Vicki Kelly: “Like dragging a 20-pound cannonball chained to your leg.”

Many who live with RA agree that no matter how vividly and graphically they depict their pain, skeptics continue to doubt the severity of their symptoms.

“No matter what you say, people don’t get it,” says Pat Fogarty Volker.

Claudia Heming agrees: “It is just too hard, and all you get is a blank stare!”

For young people with RA, navigating an RA-illiterate world can be especially daunting. Miranda Benson says that many people assume arthritis affects only older people. “Arthritis doesn’t know age,” she remarks. “Yes, I’m young; yes, I look fine, but you can’t see my pain.” Benson sometimes finds herself fielding irrelevant anecdotes from those who equate rheumatoid arthritis with a grandparent’s osteoarthritis: “My cousin’s uncle’s nephew has arthritis, and he’s able to get around just fine,” Benson mimics, noting the all-too-familiar, widely held misconception about arthritis and age.

With such limited public awareness, many people living with RA ultimately avoid telling others about the disease or, at most, confide in a select few.

Carmen Tita is choosy about whom she tells: “I try to act as normal as possible and keep my ‘clown’ face as much as I can.”

Suzy Bones empathizes but also notes the downside to keeping up a charade: “It’s totally exhausting—so much psychic energy!”

Paula Burton Deppe says, “I do what I can, and if they don’t understand, it’s not my problem. Life goes on.”

Finally, Linda Bryant Halvorson cautions that if you choose to divulge your chronic invisible illness, be careful what you post: “I still get the ‘You’re so strong’ until I say I can’t attend something, then I’ve gotten, ‘but I saw you having fun doing that activity in your Facebook pictures!’”


 

Five Things Women Living With Ra Wish You Knew

  1. RA Pain Can Be Truly Horrible. Rheumatoid arthritis ranks among the health conditions and illnesses—including cancer, shingles, and broken bones—that cause extremely severe pain.1
  2. RA Fatigue Is Not About Being Tired. In her 2012 thesis, RA researcher Stephanie Nikolaus says fatigue, which patients cite as their most bothersome symptom, needs a new definition when it comes to rheumatoid arthritis. “It is different from usual fatigue or tiredness because it is more extreme.”2
  3. People Of All Ages Get RA. According to the National Institute of Arthri­tis and Musculoskeletal and Skin Diseases, although rheumatoid arthritis often starts in middle age and is most common in older people, children and young adults can also be diagnosed with RA. The disease, which causes inflammation in joints, should not be confused with osteoarthritis, which is due to wear and tear on joints.
  4. RA Can Be An Invisible Illness. Because many people with RA do not “look sick,” they encounter the misperceptions that come with having an invisible disease: people not believing they are ill (or believe they are frauds or fakers). Netherlands researcher Mer­rigje Belia Kool says that this lack of under­standing and validation toward patients with rheumatic diseases is an “important additional burden on top of the symptoms.”3
  5. RA Pain Can Vary From Day To Day. Those with RA find it especially distressing that when they have a sudden flare and need to cancel plans, they are often treated as though they are making excuses. Health writer Carol Eustice notes in about.com that with rheuma­toid arthritis “Pain levels can vary—not only from one week to the next, but from one day to the next, and sometimes hour to hour.”4

D.Z. Stone is social media and editorial director for CreakyJoints, the nonprofit arthritis advocacy organi­zation and popular online community with more than 72,000 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.


 

References

  1. 20 Painful Health Conditions. National Health Service website. Available at: http://www.nhs.uk/Livewell/Pain/Pages/20-painful-conditions.aspx. Accessed October 1, 2014.
  2. Nikolaus S. Fatigue in Rheumatoid Arthritis: From Patient Experience to Measurement. Available at:http://www.utwente.nl/gw/pgt/bestanden/ nikolausproefschriftfatigueRA.pdf. Accessed October 1, 2014.
  3. Kool M. Understanding Lack of Understanding: Invalidation in Rheumatic Diseases. Available at:http://igitur-archive.library.uu.nl/ dissertations/2012-0824-200420/UUindex.html. Accessed October 1, 2014.
  4. Eustice C. Accused of Faking Your Arthritis? Available at: http:// arthritis.about.com/od/solvingdifficultissues/a/Faking-Arthritis.htm. Accessed October 1, 2014.

Tags: News Tips and Features, Rheumatoid Arthritis and the Spine, Uncategorized

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