There are a lot of theories about whether chronic illness is hereditary. In my family, I don’t remember anyone having rheumatoid arthritis (RA), but I do recall my mom dealing with mysterious pain throughout my childhood. She never received a diagnosis for her pain, but I always wanted to know more about her history with chronic pain, so we sat down for an interview.
Emil: What is your history with chronic pain: When did you start to experience it and where was it?
Mom: My first prominent experience was when I was 25 years old. I was practicing clarinet a couple of hours each day and typing on an electric typewriter at work, when I started experiencing problems with my wrists and fingers. Soon after, I started having pain in my back. Over the years I’ve had mysterious pains, stiffness, and flare-ups in joints and different points in my body.
Emil: What was the process of diagnosing and treatment like back then?
Mom: Originally, I went to a couple of doctors and one thought I was suffering from carpel tunnel syndrome. While I had some of the symptoms, I just felt I didn’t have the classic symptoms (no tingling and such) and I wasn’t keen on surgery. I was prescribed anti-inflammatory medicine for both my hands and some back issues, but I wasn’t able to tolerate it. After many tests over the years, it seems I have some sort of myofascial pain syndrome as well as arthritis.
Emil: Have you noticed any changes or developments in medicine and treatment since then?
Mom: Yes, alternative treatments such as meditation, physical therapy, acupuncture, acupressure, exercise therapies such as the Feldenkrais method, and biofeedback programs are more available.
Emil: What has been your biggest sacrifice due to chronic pain?
Mom: I had to stop playing clarinet for several years and I had to cut back on my work; quit keyboarding.
Emil: How has your chronic pain evolved? Compare it now to when you first experienced it. Have you noticed what causes flare-ups or what alleviates them?
Mom: At first, it was very frustrating as the pain and discomfort would last longer and cause much anxiety and fear. Over the years I’ve been able to manage by being aware of my limits in how much I can do, and how to move my body to avoid flare-ups. It took many years and a lot of patience, but I’m accepting of my situation. When I experience a new symptom, I don’t get as stressed out about it.
Emil: If there’s one thing you wish friends and acquaintances without chronic pain knew about your condition, what would that be?
Mom: At my age, most of my friends have experienced something that has impacted their health, so most are very understanding. Younger acquaintances just chalk it up to old age!
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Emil DeAndreis is a baseball coach, and an English professor at College of San Mateo. His memoir, Hard To Grip, chronicles his journey of losing a professional baseball career to rheumatoid arthritis. He lives in San Francisco with his wife. Follow along with Emil on Twitter.