I was diagnosed with lupus and rheumatoid arthritis in 2008, at the age of 22.
I felt totally alone and didn’t know anyone who was going through what I was. So I started a blog a week after I was diagnosed and quickly learned that I wasn’t alone. I also have a PhD in sociology and a master’s degree in health advocacy, so I’m always interested in learning more about how others cope with illness. My blog was, and continues to be, a lifeline for me.
While I’m lucky to have found a combination of medications that work to keep my lupus and RA in check, I can say I’m at a point where I have more good days than bad. The pain and fatigue are still a constant struggle. If you’re reading this and you have RA, you understand the struggle is real — you know what I meme!
Do you ever have a morning where you wake up and think, “I want to get out of bed, but I can’t even… ”? I completely know the feeling. And while pain is horrible and disruptive, as this meme suggests, at least it lets us know that we’re alive, even when we can’t get out bed.
When people ask us how we are, I know that most of us tend to default to “I’m fine,” even when we aren’t fine, which is most of the time. Even when I’m in pain, I usually tell people that I’m OK because I don’t know if they’re prepared for or can handle the real answer or the reality of what my daily life is like.
Rarely does my pain disappear. And as a result, I’m sometimes forced to stay on the sidelines of life while other 30-somethings (or 20-somethings, as I was when I was first diagnosed) are doing things that I wish I could be doing. Just like saying “I’m fine,” sometimes we have to fake it ’til we make it. That is great when I can. But when I can’t, it’s disappointing to say the least.
Living with chronic pain means that you become accustomed to it. Sometimes it becomes hard to distinguish between whether we’re feeling less pain or our meds are working. I remember getting a steroid infusion after I was diagnosed and my meds weren’t working yet. My mom asked me if I was in pain. I was like, “Pain? What pain?” I think that is the one and only time in 10 years that I’ve been able to say that.
Living with RA means literally fighting for our lives and our health daily. So, while not totally pain-related — whether we are battling pain, fatigue, or another issue related to RA — we could all use some extra spoons because we usually don’t have enough of them to begin with.
If pain is the stick by which we measure our lives, then those of us with RA certainly have a lot of it. Usually pain is really only seen as negative. But it’s funny how words and pictures can express what the pain of RA is like and even lighten it up a bit.
Leslie Rott was diagnosed with lupus and rheumatoid arthritis in 2008 at the age of 22, during her first year of graduate school. After being diagnosed, Leslie went on to earn a PhD in sociology from the University of Michigan and a master’s degree in health advocacy from Sarah Lawrence College. She authors the blogGetting Closer to Myself, where she shares her experiences coping with and living with multiple chronic illnesses, candidly and with humor. She is a professional patient advocate living in Michigan.