My 20th RAnniversary

In September 2000, my life changed. I was 22 years old and was in what was supposed to be my last semester of college. While I should have been exploring job prospects to begin my career, I was instead searching for answers as to why joints throughout my body were swollen and hurting and why I was overpowered by fatigue.

At that point, I’d been misdiagnosed with sprains, tendonitis, and chronic fatigue syndrome for several years. But my symptoms had gotten much worse in recent months and I’d gone from GP to an orthopedist to a rheumatologist.

It was this final specialist who looked past my lack of rheumatoid factor in my bloodwork and diagnosed me with seronegative rheumatoid arthritis/rheumatoid disease (RA/RD).

Two decades with RA

Now it is September 2020, two decades since my diagnosis. During my post-diagnosis research about RA/RD, I read that researchers hoped to have a cure within 20 years. I remember feeling crestfallen, as 20 years seemed like such a very long time. Yet, here I am, having made it through those two decades.

Of course, we still don’t have a cure. There is a wide array of treatment options that were not available when I was a college student, but the cure is still eluding researchers. I’m glad I didn’t know that back in 2000, as the idea that I wouldn’t have to contend with this disease my entire long life ahead gave 22-year-old me some hope.

The future seemed so uncertain

When I think back to that college girl discovering she had a degenerative autoimmune disease, I wish I could give her a big ole’ hug. It was so scary to discover that my symptoms were due to a serious condition that I was stuck with for the foreseeable future.

I didn’t know what this diagnosis meant for my college or professional career, what it meant for my mobility and activity levels, or whether I would be able to have children. I felt like all the plans I had taken for granted were now uncertain.

There have been setbacks and accomplishments

While these past 20 years have been filled with pain, fatigue, setbacks, and challenges, they’ve also held a lot of accomplishments and joy. I needed an extra semester to finish my bachelor’s degree, but I did it and even went on for a master’s.

My career has included challenging and rewarding jobs, although it has also contained some extended sick leaves and RA/RD-related job changes.

I have a full life - it just looks a bit different

I am in pretty good physical shape and still bike, swim, walk, and hike when I’m not in a flare. I have two amazing children who fill my heart to overflowing with love, although sometimes I have to tell them not to touch me because my body hurts too much. I have a very full life; it just looks a little different than it would if my daily experience did not include physical pain.

How RA has changed me

In many ways, RA/RD has aged me beyond my years. This is true in knowing what chronic pain is like, in owning a cane, in feeling creaky and unsteady at times. It is also true in feeling wise and strong. Having survived two decades with this disease, I don’t sweat so much of the small stuff. I savor my good days, soaking in the feeling of having my child on my lap or going for a walk through the woods, as I know the ability to do these things can disappear without warning.

I know I am courageous in facing life, seeing all its scariness and uncertainty, and taking that next step anyway. Pretty soon, I will have lived more years since my diagnosis than before it. While I would never choose to have this disease, I have grown in spirit and perspective in surviving it.

20 years of survival and living a full life

I am taking a moment to celebrate 20 years of survival and living a full life in spite of this awful disease. In 2000, I wasn’t sure I could do it. I’m doing it and will keep on doing it.

Acknowledging this RAnniversary, out of curiosity I looked up the customary gift one gives at the twentieth year. The search result couldn’t have been more fitting: the traditional gift is porcelain and the modern gift is platinum. My body can feel like a delicate piece of china, while my spirit feels strong, dense, and solid.

You will make it

If I could go back to that 22-year-old girl I was, I would first give her a very big, long, gentle hug. Then I would tell her, “It’s going to be okay. It’s not going to be easy, and sometimes it’s going to be so miserable you won’t know if you’re going to make it. But you will make it. You will not only survive, your spirit will thrive. You will develop determination, patience, perspective, courage, and gratitude. You will struggle. And you will be okay.”