Living With Rheumatoid Arthritis: My Biggest Regrets

Three Things I Wish I Could Do Over

Anxious woman sitting in a sofa daydreaming
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I have lived with rheumatoid arthritis for more than 4 decades. I experienced my first symptoms in September 1974 at the age of 19. As I look back over those decades and realize I have spent about twice as many years with a chronic disease as I did pre-diagnosis, I am proud of how I have managed my disease and lived my life. For the most part, that is. I mean, we all have regrets. I actually can point to three major regrets I have that are associated with my rheumatoid arthritis journey.

I decided to tell you about the regrets with the hope that some of you may learn from it and perhaps not repeat my mistakes. But, I also know that each of us with rheumatoid arthritis has our own journey. At the very least, I hope my experiences show you that it is important for us to be careful, thoughtful, and methodical with the decisions we make about our life with rheumatoid arthritis.

Regret #1 -- Around 1975, a year after my initial symptoms had started and I was being treated by our family doctor, I requested a referral to a rheumatologist at The Cleveland Clinic. I lived in Cleveland at the time so it made sense to see what this world reknowned medical facility and its doctors could offer me. To make a long story short, my rheumatologist recommended that I be admitted to the hospital for about a week for a course of three drugs, some to be administered intravenously. I didn't even give him a chance to explain his plan fully.

I immediately said "I'm in college. I don't have time to miss classes and to be admitted to a hospital."

I know he didn't have a cure for me, since we know there is none to this day. But, he did speak of "dampening down the inflammation" and "gaining control". At age 19-20, I was clueless about the impact of rheumatoid arthritis.

I simply saw it as an intruder in my life, and I decided that denial suited me. In my mind, there was a swirl of thoughts -- I don't need that. It won't. I won't. It can't.   

I chose an oral course of methotrexate as my alternate treatment plan since I opted out of the suggested hospitalization. The rheumatologist was disappointed. To this day, I remember his face when I told him. And even then, I was fearful of the methotrexate, which at the time was still considered an experimental drug with potential consequences of liver toxicity. Feeling that methotrexate wasn't working, I went on and off the drug several times. We never tried raising my dose which can have good results for some people. My regret is that I didn't just listen to my rheumatologist. Perhaps I could have achieved remission early on. We will never know. We don't get do-overs.

Regret #2 -- After I graduated from college in 1977, I was working in a hospital as a Registered Medical Technologist. I worked fulltime for 10 years but it was becoming increasingly difficult with my rheumatoid arthritis.

I decided to go to part-time status and did that for 5 or 6 years when I decided I could no longer do my job. I quit and applied for Social Security Disability. As my medical technologist career wound down, I had overlooked some important financial facts. If I had quit while I was still fulltime, I would have been entitled to a Long-term Disability benefit. I lost that benefit when I switched to part-time. Big. Financial. Mistake.

In my mind, I thought I would never quit working at the laboratory. I would go from full to part-time and when things got better, back to fulltime. It was denial steering the boat again. My regret is that I was not more aware of the financial impact of my decisions and that I was not more realistic. (Note: I actually only stayed on Social Security Disability a short time as I began my new writing career, which I do to this day).     

Regret #3 -- I wish I knew then what I know now. Throughout my many years with rheumatoid arthritis, the importance of exercise and regular physical activity was never emphasized by any of my doctors. As a matter of fact, after one of my joint replacement surgeries, I remember asking the surgeon about exercising beyond the 2 month stint of physical therapy that is typically required. The surgeon told me I didn't need more. He said I was young and would just "bounce back". It didn't happen that way.

More recently, I asked for a physical therapy referral from another orthopedic surgeon. He said it wouldn't help. I felt I could rebuild and regain some strength I had lost after experiencing two stress fractures. This time, I knew better. I took it upon myself to find a great gym, get an evaluation by their physical therapist, and insist on the referral from my orthopedic surgeon so insurance would cover the physical therapy visits. It has made a huge difference. I still go to the gym regularly.

But, I regret that I missed out on years of exercise when it wasn't emphasized or recommended to me. The "Keep Moving" campaigns we now see from the Arthritis Foundation and Centers for Disease Control and Prevention were not obvious back then. If they were, I didn't see it. Quite possibly, I wasn't looking for that. Now, I realize the importance of exercise in managing rheumatoid arthritis.    

The Bottom Line

Be fully aware of the impact of your decisions. Make sure you are being realistic and that denial is not masking the reality of your situation.

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