What Disease Awareness Means to Patients

What Disease Awareness Means to Patients

Personal reflections on Rheumatoid Awareness Day by Kelly O'Neill

Rheumatoid disease (RD) can affect our attitudes

Early in my book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease, I talk about my grandfather and that I understood so little of his rheumatoid disease (RD). The things that I did know stand out to me, but mostly there are questions. Why didn’t I ask him while I could have? And more so, why didn’t other family members know more?

Having RD does touch every area of my life in some way. It’s not necessarily bad—it’s just a fact. Our experiences help to frame our lives and our choices.

Let’s think for a moment about the part RD plays in framing our lives and the ways that our loved ones are—or are not—aware of that. If you are a person with RD (PRD) ask yourself, “What are the ways that RD gives me a new normal?

Do other people really understand what this is like?

  • Do I tell others my fears about the disease progressing?
  • Have I become more private about any pain that I suffer?
  • Are others aware that treatments can be very disappointing?
  • Do I appreciate the little things more?
  • Am I more sensitive to others’ suffering?

Of course pain can also make us feel irritable. But oftentimes we become more patient—by necessity! It’s hard to live the Groundhog Day movie—the same problems over and over—and not change! It sure transformed the mindset of Phil in the movie.

What if there were no disease awareness?

PRD still don’t know why they got the disease or how bad it will get, since it does progress even in people who do respond to treatments. PRD still can’t know whether a medication will help at all or just create more problems. The level of knowledge we have about RD reminds me of how it was for diabetes a hundred years ago when insulin was discovered. PRD know that if they tell anyone they have “rheumatoid arthritis,” it will often be compared to arthritis (osteoarthritis) of the knee or some minor aches and pains.

Here is where I gingerly try to step into my grandfather’s shoes. Informed by direct contacts with tens of thousands of PRD and studying medical history of this disease, I try to imagine what it was like for him—with even less RD awareness than we have today, when there was no internet, and people brushed off the disease as “rheumatism.”

How quickly did he become private about how the disease affected him, so others wouldn’t think he was exaggerating? How did he feel having no idea that millions of others around the world had the same symptoms he did? I personally know what it was like for him to have only steroids for help, but did he wish there were better medicines? Did he ever feel like he was “crazy” for losing his voice or so many other symptoms that people write to me about?

Ways disease awareness matters

Awareness about specific diseases and conditions is always helpful in these ways:

  • Increase research interest and funding
  • Inform research for improved treatments
  • Generate appropriate accommodations

Of course, the goals of RPF have always included these things! But there’s more!

How different it is to live with RD now that awareness has begun! In the past decade, we’ve brought awareness to so many issues related to the disease. And we’ve watched changes happen! There’s greater emphasis on symptoms outside of joints and fewer insulting messages about easy-peasy cures. There’s a long way to go—but our hundreds of billboards and consistent communications with industry and rheumatology have brought progress.

I thank God I live in an age when I can easily connect other RA warriors—not be completely alone like my grandfather was. I met several of my very closest friends through my RA Warrior website and thousands of others say the same. There is much more to do and RPF will continue to press forward in RD awareness campaigns, research, and improving care for PRD.

Meanwhile, Happy Rheumatoid Awareness Day! #RheumDay

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