Thrown into the Deep End: Concerns of a Novice Caregiver
After that painful, sleepless night in the fall of 2006, Lisa finally received a diagnosis. What caused the pain and discomfort in her extremities? It was rheumatoid arthritis. Although the good news was that with the diagnosis, medication could be prescribed to help alleviate her symptoms, the bad news was that Lisa had now been diagnosed with a second autoimmune disease.
I’d naturally been concerned after Lisa had been diagnosed with MS about eighteen months earlier. I knew MS was a progressive disease that could have a significant impact on quality of life. But I also knew that medications available to control the symptoms of MS had improved since I’d first learned about the disease as a child. Thus, while discouraged and worried about Lisa’s MS diagnosis, I tried to maintain a cautious sense of optimism that our life together wouldn’t suddenly change overnight. And so far, she had responded well to her MS medication.
Her RA diagnosis, however, left me with a much greater feeling of anxiety about what it would mean for us as a couple. This was because the RA had a much more overt effect on her. Just looking at her swollen fingers and hands and watching her suffer from the pain in her joints made it clear to me that the disease was impacting her. As she sought a proper diagnosis, she experienced this sort of pain and discomfort almost daily and I had lots of questions.
Would her pain continue even after she’d been diagnosed and could be put on a medication? What could I do as a caregiver to help her, or support her? Could I even serve as an effective caregiver? I just didn’t know what to do.
All of these questions swirled around in my head, but the last question worried me the most. I knew very little about health and wellness. Throughout my life I’d been largely free of health issues. As I child I had regularly caught cold with season changes and occasionally got sick just as everyone does. And sure, I’d had my share of bumps and bruises doing what children do; wandering through the woods, playing pick-up sports with the local kids, riding bikes in the neighborhood, and so on. But I’d somehow gotten through childhood without any trips to the ER.
My good fortune has continued into adulthood. The only serious health issues I’ve experienced, even now in my mid-40’s, are all basketball related; one broken wrist over twenty years ago and two dislocated kneecaps. As you might expect, I don’t set foot on the court much anymore.
My background left me feeling completely lacking when it came to what I could do for Lisa. I didn’t have any ongoing health concerns, rarely visited the doctor, and just as rarely had to take medication. I felt ill-equipped to navigate the healthcare system. Even more worrisome to me, I was deeply concerned that I lacked the empathy and awareness to provide Lisa effective and timely assistance when she needed it. As Lisa faced two serious diseases, MS and RA, I could only wonder if I’d be able to manage as a caregiver.
These concerns still trouble me and thus seem good topics to explore further. One positive which helps me is knowing that I’m not alone in this journey; Lisa and I are learning and growing together.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?