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8 Things I Want You to Understand About Living With Rheumatoid Arthritis

I’ve been living with a diagnosis of rheumatoid arthritis (RA) for two-and-a-half years, but looking back, I probably had RA for much longer than that. Since my diagnosis, I’ve had a significant decline in my physical health. As an avid athlete, the physical changes of RA have been very difficult for me to deal with. I continue to attempt to keep up with my activities. I’ve learned to appreciate the good days and do what I can on the bad days. Sometimes, a day on the couch is the only activity I’m able to do.

What’s been even more difficult for me is the lack of understanding and support from some of the people around me. Maybe if they knew more about RA and maybe if I had the opportunity to share some of the things I wish they knew about RA, they’d get it.

Here are eight things I want people to understand about living with rheumatoid arthritis.

1. My disease is invisible. That means you can’t see it. When I’m feeling well, I’m going to run, lift weights, waterski, kayak, cycle…and when I’m not feeling well, I’m going to try and I will make adaptations. Believe it or not, all this activity is good for me. Movement keeps my joints mobile.

2. RA is not your grandmother’s arthritis, unless she has RA. RA is a progressive, systemic autoimmune disease that affects every organ in the body. RA should really be called rheumatoid disease.

3. I can be forgetful sometimes. Chronic inflammation, like that found in RA, can affect cognitive function. Researchers aren’t completely sure why, but it probably has something to do with the elevated products of inflammation in the bloodstream. Hey, at least I have an excuse!

4. At least it’s not cancer, but I can anticipate the likelihood of a shorter lifespan and the increased chance of developing cancer. I can also anticipate the possibility of becoming disabled as the disease attacks my joints.

5. Yes, I need those strong medications to keep my disease under control. No, I can’t cure RA with food, vitamins, essential oils… and please don’t tell me about someone you know who has. While diet, supplements, oils, etc. haven’t been proven to treat RA or provide symptom relief, I am willing to try things that may be helpful for symptom control.

6. While most people associate pain with RA, fatigue is the most common symptom of RA. I have to rest often and I may not be able to keep up with my activities the way I used to. I may even have to cancel plans when my disease unpredictably flares or when I’ve overdone it the day before.

7. I’m not faking it. Just because you saw me out running or maybe you saw my post on social media doesn’t mean I’m not having symptoms. Don’t judge me. Staying active and positive is important to my mental health.

8. Slowing down and taking it easy is the hardest thing I’ve had to do. I’ve lived my life being able to tackle whatever I wanted. I’ve been described as tenacious, stubborn, and determined. I’ve run marathons. I became a mom after years of infertility. I became a nurse practitioner at age 45. This is the first obstacle life has thrown in my path that I haven’t been able to defeat. But with everything else I’ve encountered in my life, I’m going push back as hard as I can. I will not let RA win.