"Mommy, will you play with me?" my 5-year-old son asks from the doorway of my bedroom. "No," I respond quietly, "I can't right now. I don't feel good. Maybe later." I can't get out of bed, let alone chase my son around the yard like I used to, and the guilt of this inescapable realization is all-consuming. But as a mom with Rheumatoid Arthritis I have had to get used to not being the mom I want to be... or the mom my kids deserve.
For the most part my illness is invisible, save for my swollen hands, feet, and the ever-present bags under my eyes. And because my pain isn't visible most people don't take it seriously, let alone understand it. For example, Rheumatoid Arthritis (RA) has the word "arthritis" in its name, but it's nothing like the arthritis your grandmother probably has. So when people hear about my condition and immediately ask me if I've tried ibuprofen, or the latest supplement or cream, I have to laugh to keep myself from crying. It's not that I don't appreciate their help, it's just that RA is different and I know, from painful experience, that run-of-the-mill, over-the-counter remedies aren't going to work. Ever.
RA is a chronic condition where, for some unknown reason, your body's immune system starts attacking your joints. The inflammation created as a result of this attack makes my fingers, toes, wrists, and ankles feel hot, stiff, and sore. I liken the pain to back labor, which just so happens to be the worst pain I have ever felt... until now. Some days it's impossible to get out of bed in the morning, and other days I can't open a bottle of medicine, pick up my toddler, or even hold a cup of coffee. Everything I need to be able to do as a mother is inhibited by this disease, yet rarely is it taken seriously.
When the pain doesn't threaten to derail my days, the fatigue does. Rarely do I have the energy to do what I want, or need, to do each day to raise my kids, do my job, and keep my house clean. Being a mom is hard, regardless, but being a mom when you feel like you have a never-ending flu and broken fingers and toes is even harder. My kids don't understand, though, and I'm realizing that trying to explain my condition to them is nothing short of impossible.
My doctor is constantly adjusting my medications as if she's conducting a symphony — monitoring my symptoms and side effects to make sure that the treatment isn't worse than the disease.
RA is also hard on my mental health. I feel like this disease casts a shadow over my life, making it hard to function, or breath, or have hope that things will eventually get better. RA has made my depression worse as result, and especially when I can't go outside, play with my kids, or exercise. And since my depression keeps me house-bound even on the days when I'm able to manage my pain and fatigue, my mental health is essentially making my RA worse, too. The cycle is vicious, and relentless, and through it all I have children who depend on me to remain present.
I was first diagnosed with RA in my early 20s and long before I had kids. I went through treatment, and when my disease went into remission I was able to stop taking medications. I thought my RA was a thing of the past, and considered myself lucky to be able to move forward and enjoy a pain-free life. Then, a few months after my youngest child was born, I started to feel a very real, daunting, familiar pain. After a few tests it was confirmed: my RA was back. And now that I'm a mom, I'm realizing that this disease is exponentially more difficult to manage when you're a parent with an endless list of responsibilities. I want, I need, a break... but a chance to take a break is rarely afforded to moms.
There are a slew of available medications that can slow RA down and help with pain and fatigue, but those medications often make me feel worse. Sure, one medication will theoretically stop my immune system from causing further joint damage, but it also suppresses my immune system to the point that I catch every cold my kids bring home from school. Another medication that reduced my pain also made me throw up for days after a single dose.
I used to be the mom who ran marathons, taught fitness classes, and my children swimming. Now I'm the mom laying on the couch while my children watch a movie.
Then there's the steroid — Prednisone — I take for a few weeks at a time. It works incredibly fast to reduce my pain and swelling, but it's horrible side-effects are impacting me in ways that I cannot overlook. I can't lose weight when I'm on this steroid, it makes my anxiety exponentially worse, and it puts me in a manic state. For example, on Prednisone I decided that it was a good idea to take my kids to the park and repaint my kitchen cabinets. I make mile-long to-do lists and then try to actually accomplish them, immediately regretting that decision the next day when I can barely walk.
My doctor is constantly adjusting my medications as if she's conducting a symphony — monitoring my symptoms and side effects to make sure that the treatment isn't worse than the disease. It's a long, frustrating, and somewhat disappointing process; one that seems to be continuously repeating. I'm constantly going to the doctor, constantly having my blood drawn, and constantly navigating juxtaposing schedules so that my mother or my husband can watch our children when I'm spending time in yet another doctor's office.
I used to be the mom who ran marathons, taught fitness classes, and my children swimming. Now I'm the mom laying on the couch while my children watch a movie. I want to be that other mom again, but I don't know if I can be. I don't know if, or when, it gets better.
RA is a women's disease. According to the American College of Rheumatology, 75 percent of those who are diagnosed with RA are women. A reported 1-3 percent of women will get RA in their lifetimes, most during their 30s or 40s and when they are more likely to also bear the load of motherhood on top of their aching joints. Chances are, my husband will never understand the specific pain I'm in. And I hope, every day, that my children will never understand it, either.
I am slowly coming to terms with my disease, and while I worry about my kids and their wellbeing I know I'm doing the best I can. I just hope that, some day, they will understand why mom was too tired to play.