Patient Blogs | Rheumatoid Arthritis
RA Is Not the Headline of My Story
photo of woman on bench enjoying view

Most people don’t know what rheumatoid arthritis (RA) is. Why would they? I didn’t, before my diagnosis in 2010. I knew what arthritis was, sure. But rheumatoid? It’s such an old-fashioned sounding word. It brought to mind old folks griping about rainy-day aches. It didn’t sound all that serious.

I found out in a hurry how serious it is. At age 45, I was suddenly and dramatically unwell. Tests confirmed RA. Some wide-eyed Googling made me think I was headed for a life of pain, disability, and disease. I was devastated. Eleven years on, while it hasn’t been easy, those particular Google nightmares have not materialized.

The best wisdom I received in the scary early days came from a friend whose mother-in-law, Jane, had RA for decades. My friend described how Jane’s struggles with RA waxed and waned. There were times when RA was front and center. It demanded full attention, and it was hard. But there were more times when it could be back-burnered or even ignored, while the rest of life took center stage. RA was not the headline of Jane’s story.

That brief report on Jane’s experience was a lifeline. It was exactly the right message at the right moment. I suppose anyone with a chronic condition could’ve told me that it pays to play the long game. But serious illness was new to me. I was scared. It was hard to imagine an easier day when I was in the thick of painful and unpredictable RA symptoms. It was hard to accept the uncertainty.

RA doesn’t go away. The drugs used to treat it, amazing though they are, can cause harm. Every risk/benefit analysis of a medication is a semi-educated roll of the dice. I have tried a multitude of treatments, with mixed results. I’ve also had more rheumatologists than I care to admit. (I tend to quit doctors when they disappoint me, though I’ve learned to be more forgiving over time. Rheumatology is tricky.)

To complicate matters, autoimmune conditions tend to run in packs. Like many people, I have more than one. It’s hard to parse what’s what, with multiple conditions and medications. I’ve developed expertise I never wanted about disease, and medicine, and getting care in an overburdened health care system. I was in pretty perfect health before 2010. As of 2021, I have a medical record so long that doctors are hard-pressed to find the pertinent details in the mass of information. It’s a problem.

You know what else doesn’t go away, besides RA? The rest of my life. My family. My work. My hobbies and friends, joys and sorrows, dinner parties and dog walks. Sometimes RA hogs my attention. Most of the time it doesn’t. I can’t opt out of my health problems, but keeping them in perspective has become easier with time. I lead a normal life. I consider myself incredibly fortunate. I look back at my catastrophizing upon being diagnosed, and I feel compassion for my fearful self. My illness has caused me plenty of problems. It may cause more yet. RA is serious. It is also NOT the headline of my story.

 

 

Photo Credit: Michael Kohaupt / Moment Open via Getty Images

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Gillian Freney

Gillian Freney

Diagnosed since 2010

Gillian Freney is a writer and editor. Her passion for clarity in health communications is both professional and personal. She has written on behalf of public health and human services agencies for many years. She has also lived with rheumatoid arthritis since 2010. Gillian sees firsthand that everyone benefits when patients and doctors share a common understanding. She knows reaching that common understanding is harder than it looks. Gillian lives with her family in Portland, OR.

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