October 31, 2022
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Photography courtesy of Fiske Nyirongo
Having the same health condition as several family members can seem scary. But in my case, I have had more support and understanding.
I was diagnosed with rheumatoid arthritis (RA) when I was 20 years old. A part of me had always been expecting this diagnosis because both my grandmother and mother have RA.
So I knew what the diagnosis meant.
I was scared by the possibility of a lifetime of limitations and pain. But I was also comforted that their experiences could help me in the worst moments.
Is RA a trait that I want to share with my family? Perhaps not. But it is a bond nonetheless, and one that I hold very dearly.
Their experiences have guided my own journey with RA. It’s helped me navigate this condition, know what it might mean for my life, and has even provided some home-grown remedies.
My grandmother was diagnosed in her 40s, just a few years before my mother was also diagnosed. She had felt something was wrong since her 20s but her doctor could not figure out an exact diagnosis.
It wasn’t until after her pregnancies, when her symptoms flared, that she was diagnosed. Regardless of being diagnosed or not, I learned a lot from her.
My grandmother had a zest for life that was never affected by her RA. Despite her symptoms and pain, my grandmother went to every wedding and funeral that occurred in her family and friend circles. She had family scattered across southern Africa and made difficult traveling trips look easy.
Even before her RA diagnosis, my grandmother’s spirit filled me with hope. She made me think anything was possible. She was the first person in my family to be diagnosed with RA, and she lived such an adventurous and full life.
My grandmother had nine children, all before she was diagnosed with RA. For most of her pregnancies, she would not experience any pain in her joints.
Looking back, it seems that she went into remission during her pregnancies. Research has shown that around 50% of people experience lower RA disease activity during pregnancy. Roughly 20–40% experience remission.
However, 20% of individuals can also experience worse symptoms, and flare-ups may become worse after pregnancy.
Postpartum flare-ups led to my grandmother finally receiving a diagnosis. So, having children was both a time of RA remission and discovery for her.
Later on in her life, she was very open about any flare-ups. Me and her other granddaughters used to help her apply topical pain medicine.
One of my most abiding memories of her is how she smelt. She always had topical pain medication in her handbag, which left her smelling like a combination of cocoa powder and mint sweets.
My grandmother passed on in 2012 at age 82, a few months after my diagnosis and first flare-up.
My mother graduated as a registered nurse at the age of 22 — the same year she was diagnosed with RA.
Her first flare-up came when she was living alone for the first time. She had a fever, body aches, and a rash on the trunk of her body. Initially, she thought she had contracted malaria.
They tested her for every known disease at the time and every test came out negative. No one ever suspected RA, even with her mother living with it.
Her second flare-up was the worst one she has had throughout her life. She woke up one day and could not move her body. She spent two weeks as a patient in the hospital she worked in until she finally had her official diagnosis during her hospitalization.
Her matron and supervisor at the time did a thorough family history and was instrumental in getting her tested for RA.
Similar to my grandmother, my mother also went into remission in all seven of her full-term pregnancies. Apart from this, their experiences and approach to the condition were quite different.
Unlike my grandmother who often made the application of her topical pain medicine an involved family event, my mum keeps this to herself, taking great care about when and what pain medication she takes.
My mother’s physical progression of RA has also been different from my grandmother’s.
Just by looking at her, you could hardly tell that my grandmother lived with RA. On the other hand, my mother has clear physical and visible indicators of what is going on in her body. She has lost grip on her thumbs, which have curved slightly outwards away from the fingers. Her back also requires support or posture correcting.
Those with first-degree relatives living with RA may have higher odds of developing RA themselves due to genetics.
According to the National Rheumatoid Arthritis Society (NRAS), first-degree relatives of a person with RA are three times more likely to develop the condition.
But like many autoimmune diseases, the reasons a person develops RA are complex and likely caused by a combination of genes and environment.
Sometimes I have hated that RA is the prominent factor that ties me to my maternal line. This has come with its fair share of self-pity.
But as I have grown older, I have come to appreciate that relatives before me have walked the same path as I have. They have done so with less access to medical expertise but with deep knowledge about what makes the journey easier.
The lasting smell of cocoa powder and mint sweets from my grandmother’s topical ointments made me unafraid of pain treatments. Her zest for life made me unafraid of RA.
My mother’s tenacity and medical training made me knowledgeable about the condition. The differences in their approaches and symptoms made me realize that RA is very personal for everyone.
In an attempt to drop not-so-subtle hints about wanting a grandchild, my mother often reminds me about their experiences of remission during pregnancy. I used to find this irritating, but as I have grown older, I have learned that they are just trying to support me.
Sometimes my other family members with RA think they know what’s best for me — and sometimes they might — but this is when my self-advocacy kicks in.
There is a lot of wisdom in shared family diagnoses, but you must also put on your discernment hat to figure out what works best for you. With the help of all my family knowledge, I have also found my own way of dealing with RA.
Having a health condition that has been passed down from generation to generation can seem scary. But in my case, I have had more support and understanding than many.
I am grateful to have the experiences of those who came before me. They have shaped how I handle my diagnosis.
It is not a death sentence to have RA — my grandmother’s and mother’s lives have proved this to me. They showed me how to thrive with RA.
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