Navigating a chronic condition on your own terms can be challenging, especially when family members think they know best.
The first time I had a rheumatoid arthritis (RA) flare-up, I thought I was having a heart attack. I was 20 years old, a first-year student in college, and 265 miles away from home and my parents. I was in so much pain that I asked my roommate to call my mother.
In my pain haze, I heard my mother instruct my roommate on how to help me. My mother told her to give me two paracetamol tablets and to massage my chest area until the pain reached dull levels. My roommate followed my mother’s instructions but still, the pain persisted through to the next morning.
My mother called the next day to tell me she suspected I had RA. She told me where to go to have my uric acid levels tested and explained that high uric acid levels are sometimes an indicator of RA.
Sure enough, after undergoing testing I was told that I likely had RA.
Looking back now, I was not as scared at the time as I maybe should’ve been. My lack of fear mostly came from knowing that my mother had RA too, as did her mother. Other members of our family had also lived with other types of arthritis.
It didn’t seem like arthritis had kept any of them from living full lives. I found this fact comforting.
My family had a lot of advice about how I should deal with my flare-ups. Most of their advice centered on topical treatments and frequent massages. None of them spoke favorably of painkillers — especially my mother.
My mother works as a nurse and yet, she has always been against taking prescribed medications to treat pain. According to her, painkillers “do more harm than good”. I always followed her advice.
When 2 years passed, and I hadn’t had another flare-up, I thought I was out of the woods. I started to think that my mother was right: Arthritis was an easy condition to manage. I thought that the first flare-up was the worst I would experience. But I soon learned I was wrong.
My second flare-up took place at home. I was 22 years old, enjoying my school break. This pain was different, it wrapped around my entire torso and came in waves. Every 5 minutes, I would double over, my skin soaked in sweat. I sat in bed, wide awake, as my mother’s hands tried to massage the pain away.
I asked my mother for something stronger than paracetamol every 5 minutes. She didn’t budge. The pain was so intense that I couldn’t sleep. Finally, in the early morning, she left my side and came back with a red package. She gave me a pill from the package, and within an hour, the pain subsided into a dull ache in my chest.
When she left for work the next morning, I snooped through her things trying to figure out the name of the medication she had given me but couldn’t find the red package.
Throughout the day I felt puzzled. I wondered how my mother had lived with this condition for almost 40 years without medication. How was it that her mother had lived with it for 70 years without needing treatment?
My mother came back home later that day and sat me down. She had me promise her that I would call her each time I had a flare-up. She also emphasized that I shouldn’t get used to taking painkillers.
I wanted to argue with her, because there was no way my roommate would be pleased about staying awake with me, massaging my chest, each time I had an attack. But I didn’t argue.
For the first time in my life, I found myself doubting my mother’s medical advice. The part of me that had initially felt unafraid and invincible navigating my diagnosis had disappeared. I felt like, maybe, I would have been better off if my mother and other relatives didn’t have the same condition.
Maybe they would be more empathetic if they had never lived with the same pain. I realized this was ironic; shouldn’t I feel more comforted by my family’s shared diagnosis, not less?
I had additional flare-ups in the months following. They were each somehow worse than the flare-up before. Eventually I couldn’t stand the pain anymore, and I decided to visit a private practice. I was well over the adult age to seek medical treatment on my own.
The doctor I saw asked a lot of questions about my symptoms. At the end of the consult, he suggested I seek a second opinion from a hospital. He implied that it would be a good idea to rule out anything else beyond RA. He told me to ask for an ECG heart test.
I left the clinic with diclofenac, a slightly stronger painkiller than paracetamol. More importantly, I left the clinic feeling more confident about my ability to take care of myself and make decisions over my own health.
My ECG test came back normal, providing validation that what I had was in fact RA. The doctor kept in touch with me for years after. He helped me feel like I was in control over my pain.
For years, I didn’t tell my mother that I was seeking treatment. I was scared of disappointing her. I have only recently shared my secret with her. While she isn’t delighted about it, I am grateful to no longer be sitting in pain, not knowing how to make it go away and relying on a roommate to help me.
Untreated pain has disadvantages, too. Unrelieved pain can prolong illness recovery, impair immune and gastrointestinal functioning, increase emotional and physical stress, and even lead to serious complications (like deep vein thrombosis if the pain is limiting mobility).
What I’ve learned to be true is that while your family might give you advice with the best intentions, they might be operating from a place of personal experience.
Sharing a diagnosis does not mean we have to share a treatment plan. My pain threshold might be lower than my mother’s, or my pain might be more severe than hers.
I am almost 30 now, and by figuring out how to listen to my own body, I’ve managed to get down to one flare-up per year. I’ve found that my flare-ups occur during the rainy season, so during those months I try to avoid spending too much time outdoors and make sure to stay warm.
The most important thing to remember is that you know your body best. But you should get a second opinion, all the time. You will be grateful that you did.
Article originally appeared on October 29, 2021 on Bezzy’s sister site, Healthline. Last fact checked on October 29, 2021.
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