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I have been living for two and a half years with a rheumatoid arthritis (RA) diagnosis, but in retrospect, I probably had RA much longer than that. Since the diagnosis, my physical health has deteriorated considerably. As a pbadionate athlete, the physical changes badociated with RA have been very difficult to manage. I continue to try to follow my activities. I've learned to appreciate good days and to do what I can on bad days. Sometimes a day on the couch is the only activity I can do.
What was even more difficult for me is the lack of understanding and support from people around me. Maybe if they knew more about RA and maybe if I had the opportunity to share some things I would like to know about RA, they would have it.
Here are eight things I want people to understand about living with rheumatoid arthritis.
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1. My illness is invisible It means you can not see it. When I feel good, I will run, lift weights, water ski, kayak, bike … and when I do not feel good, I will try and I will make adaptations. Believe it or not, all this activity suits me. The movement keeps my joints moving.
2. RA is not an arthritis of your grandmother unless she has RA RA is a progressive systemic autoimmune disease that affects all organs of the body. PR should really be called rheumatoid disease.
3. I can be forgetful sometimes. Chronic inflammation, like that found in RA, can affect cognitive function. The researchers are not sure why, but it probably has something to do with the high inflammation products in the blood. Hey, at least I have an excuse!
At least it's not cancer, but I can anticipate the likelihood of a shorter life and the increased risk of developing cancer. I can also anticipate the possibility of becoming disabled when the disease attacks my joints.
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5. Yes, I need these powerful medications to keep my illness under control. No, I can not cure RA with food, vitamins, essential oils … and do not talk to me about someone you know. Although it has not been proven that diet, supplements, oils, etc., treat RA or relieve symptoms, I am willing to try solutions that may be useful for symptom control.
6. While most people badociate pain with RA, fatigue is the most common symptom of RA. I have to rest often and I may not be able to follow my activities as before. I may have to cancel diets when my illness gets worse in an unpredictable way or I exaggerated the day before.
7. I'm not pretending. It's not because you saw me running or that my article was published on social media that I have no symptoms. Do not judge me. Staying active and positive is important for my mental health.
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8. Slow down and take easy steps is the hardest thing I've had to do. I lived my life by being able to do what I wanted. I have been described as tenacious, stubborn and determined. I ran marathons. I became a mother after years of infertility. I became a nurse practitioner at age 45. This is the first obstacle that life has thrown at me and that I have not been able to overcome. But with everything I've come across in my life, I'm going to push back as hard as I can. I will not let RA win.
Read more stories like this on The Mighty:
When people who know that I have chronic pain ask, "How are you doing?"
14 daily tasks and how they feel for a person with rheumatoid arthritis
I was not prepared for the ways in which chronic disease changed my body
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