I was around 26 years old when I started experiencing symptoms. In the mornings, I felt this crushing fatigue, and my body was really stiff. At first, I thought maybe I was just on the verge of catching a cold or something. But it didn’t go away. I just kept thinking, “What is my body doing? What is really going on here?”
For the next few years, I went through a lot of doctors. Because I was so young, they kept telling me, “It’s just a viral infection. You’ll get better.” Some of them thought I had fibromyalgia, but that wasn’t right either. So things just continued to get worse and worse, and I still didn’t have answers.
Finally, I saw a doctor who knew right away what was going on: rheumatoid arthritis. By this time, I was 32. It had been years of trying to figure this out. So when my new doctor said we should start aggressively treating it, I said, “Absolutely. Let’s do this.”
I just wanted to feel better. On the worst days, the pain was so loud, and it wouldn’t go away. It got to the point where I was struggling to button my pants, put on jewelry, and even tie my shoes. The pain wasn’t manageable, and it was affecting my quality of life. Despite that, I’d say the fatigue was the worst part — it was just so mind-numbing and all-encompassing.
I work full time, and one of my sons was only about 2 years old then, so trying to balance all of these things felt almost impossible. When it got to the point where I felt like I couldn’t even function as a person, let alone as a mother and an employee, I thought to myself, “There just has to be something else I can do to take care of myself and rise above this. I have a life, and I want to live it to my best ability, and this illness is absolutely in the way right now.”
It was hard to come to terms with my diagnosis. RA is progressive, it’s degenerative, and of course, it’s forever. It was extremely overwhelming. All I wanted was to be able to find balance in my life, and to prevent RA from eating away at the little things that allow me to be happy.
That first year after diagnosis was rough. On top of dealing with RA pains and fatigue, I ended up having a trans ischemic attack, which is like a tiny stroke due to a blood clot. It turns out it was caused by the anti-inflammatories I was taking.
I lost a lot of friends during that time. People didn’t really understand what I was going through, and I was surprised to find that people wouldn’t believe I was as sick as I was because I physically did not look the part. They would look at me and say, “You’re so young, you’ll be fine!” Or they’d hear “arthritis” and just automatically assume it was like osteoarthritis. I felt very alone, and I didn't have anybody to talk to.
It was so hard to grasp that people could look at you and make a judgment about how sick you are just based on your appearance. I had to learn that, although it was unfair, it was out of my control. I saw it as an opportunity to clear those people out of my life, because it wasn’t healthy for me, and I couldn’t afford to maintain those relationships. I had to focus on getting better.
That’s when I joined some online communities for people living with RA, and I read through all of these stories about men and women who have been through similar situations. I finally saw that I wasn’t really alone. It was just what I needed. I realized that I wanted to be able to help other people, too, and to validate their experiences like these people had validated mine. That was an incredible driving factor in my desire to educate myself about the disease and become an advocate for people with chronic illnesses.
Learning to manage RA was a full-time job. I changed my diet, my workout routine, and even my work schedule. I wanted to do everything in my power to stay healthy so that I could take care of my family. I knew I needed to get a grip on this disease, and fast.
There were some things I had to give up altogether because of my RA. For example, I used to love to run, and I was really into kickboxing, but those kinds of intense physical workouts were actually doing more harm than good. It created more fatigue, and made me even more sore, because I wasn’t really allowing my body to heal. I had to learn how to pace myself, and I took on more gentle activities like yoga and tai chi.
My doctor said, “In order to remain mobile, you have to be mobile.” That really resonated with me. I feel so much better after I exercise. But some days, my body is so sore and tired that I just don’t make it happen. I have to remind myself, “It’s OK that you didn’t work out today. Tomorrow is a new day. Let’s give it a shot then.”
My family didn’t really understand RA at first — none of them had ever dealt with any sort of autoimmune disease before. But educating myself and my family has turned out to be the key in building a consistent support system for me and for them. We're all in this together. I just want to be the best person I can be — for myself and for them.
While my family and I have some really hard days with this illness, I think it’s important to set aside time when I can connect with them in a way that lets us forget for a few hours and just let our hair down. Whether that’s taking my son to the park, going to the movies, or cooking together, it’s great to just have fun and be like everybody else for a while.
It’s been hard to live with RA, of course, but I’ve also learned so much about myself because of it. I don’t know that I would have ever had the opportunity to do that kind of intense reflection if I hadn’t been handed RA. I can’t say that I wish it had never happened, because then I wouldn't be who I am.
The biggest challenge was learning that RA is like an ocean tide. The tide comes in, and you have all of these feelings and thoughts. Sometimes these thoughts are dark, and sometimes they're hard. You cry, you feel frustrated, and you're angry. But then, the tide moves out, and you can breathe again. You realize that it's going to be OK — you just have to put in the work.
Right now, I’m focusing on being more diligent about self-care. It's not selfish to say no or to find a happy medium. I’ve learned that I just need to take things one day at a time, to allow myself room to breathe and to accept that this disease is real and long term, but that I can handle it. I know that the better I take care of myself, the more successful I will be at my job, as a wife, as a mother, as a friend, and as a support system for other people who are going through what I’ve gone through.
I always call myself “the annoying optimist,” but right now, life is truly looking good. I’m on a new medication, and everything feels manageable. I did have to take some time off work recently because of my RA, but it just made me realize how grateful I am to have an opportunity to work at all, and to have the support of not only my family but my work family as well. It opened a whole new door of gratitude for me.
Just when you think you can’t be more grateful, you become more grateful. Even though I’ve learned some hard lessons because of RA, they're so valuable, so important to who I am as a person. I'm super lucky. I know that may sound strange, but I really believe that.