In the late 1990s, I was working as a senior accountant for Lockheed Martin and traveling a lot for my job. I had been having joint pain for a few years, and while some doctors suggested that I might have fibromyalgia, for example, no one seemed able to provide a definite diagnosis.
I remember distinctly that after one particular flight, I tried to stand up and felt like I couldn't walk. I was baffled, because I usually jumped out of my seat and walked right off the plane. This time, I was holding on to the bars on the side of the jet bridge, barely able to put one foot in front of the other. The pain was excruciating. People were very kind, asking if I was okay or needed help, but being stubborn I literally pulled myself up the ramp until I could sit down in the waiting area and collect myself.
From that point on, my hands and my feet were in excruciating pain. An autoimmune disease was on my radar because my mother had myasthenia gravis, and my aunt had rheumatoid arthritis. But my immediate thought was, "Is this multiple sclerosis?" because one of my cousins was diagnosed with MS when she was in her forties.
Eventually, doctors at Johns Hopkins diagnosed my RA, and pretty much from that point my body just began to get worse and worse.
I was a very active person before my diagnosis. I was the activities director for Camp Fire Girls for a time, so I jumped in and out of canoes, taught archery -- all sorts of physically demanding work and play. I worked out. I did the aerobics thing.
But several years prior to my body kind of crashing and burning, I began to notice that my joints really hurt after that sort of activity. But the main thing I began to notice was the fatigue, which was just unbelievable.
With my RA diagnosis, I finally knew what I was dealing with, and that the pain and fatigue were not in my head!
My reaction to the diagnosis was not straightforward. It was kind of muddled -- relief and fear at the same time. I was like, "Oh my gosh, I finally have a name I can attach to what I've been going through. But what a name!"
It's not something I'm proud of, but I did have a bit of a defeatist attitude in the beginning, right after the RA diagnosis, and that lasted a while. It's almost like enduring the classic grief cycle, because you've lost part of your body to this disease -- or the functionality of part of your body, certainly -- and you miss it. You grieve for it. You wish you had it back.
I remember that if I had a good day, I would think to myself, "Maybe they diagnosed this wrong. Maybe it's something else." So there's the doubt, denial, anger, acceptance -- the whole shebang.
If I was to give advice to someone diagnosed with RA today, I would tell them there's a good chance that they will go through a huge gamut of emotions -- they will feel angry, discouraged, perhaps even seriously depressed.
But the ultimate goal, through all of that, is to never, ever give up. Don't ever give up. Hold on to hope, because you still have your life. It might not be the life you envisioned, but you'll be surprised at how full it can be. For example, I can still snorkel. I'll take that!
But think about this: how often does a person get to completely change her life? How often does a person have to leave a job, on permanent disability, that she thought she would enjoy until retirement, and find new ways to stay mentally active? To challenge herself? To reinvent what she's going to do with the rest of her life? It can be scary. It can also be exciting.
In the end, I do know that having RA has made me more compassionate towards other people. It's made me love people, despite how they might have acted towards me. After all, who really knows what sort of a position they're in? Who really knows what another person is going through? For all the suffering, I think RA has made me a better person. And I'll take that, too.