April 15, 2024

Sofia Oliveira’s Lupus Journey

Hand holding pen writing in notebook

This is a firsthand account submitted through SWHR’s Share Your Story portal, as part of SWHR’s Women’s Health Perspective series.

When I was 20, I started having joint pain. Initially, I didn’t even consider going to the doctor because I knew it would be dismissed, but after a few weeks the pain got so severe I had trouble doing the simplest everyday tasks, and I also started developing a fever. I went to the doctor and was told it was most likely a virus and that I should just rest, take medication for the pain, and wait for it to pass. I refused to take any medication until I was diagnosed because I felt my pain was chronic and that taking the medication would only hide the symptoms temporarily—without addressing the underlying problem, which I worried could manifest in worse ways in the future. I started to do some research with the help of a friend who was studying medicine, and we determined that I may have an autoimmune disease. So, I booked an appointment with a specialist, and they started doing bloodwork to look for autoimmune conditions. Thankfully, even though my symptoms were somewhat generic, the blood tests results were very clear: it was lupus.

I’m really proud of how I advocated for myself during this process, because I know if I hadn’t, it would have taken a lot longer to reach a diagnosis, and the disease could have progressed to the point of being life-threatening.

I was lucky to find the right doctor and to have access to resources that allowed me to get a diagnosis in a few months. Because of this, I started treatment straight away and haven’t had any major complications since then. I began my treatment with antimalarial drugs and have also taken anti-inflammatory drugs, corticosteroids, and immunosuppressants to deal with flares depending on the symptoms and their severity. Since my first year of treatment, my lupus has been mostly under control, so I’ve reduced my treatment to only antimalarial drugs.

However, my fight didn’t stop when I got the diagnosis or found a treatment that works for me. I still have to advocate for myself whenever I experience symptoms that are dismissed easily, such as migraines and extreme fatigue. I have also been diagnosed with Hashimoto’s disease and my doctors are also looking into a scleroderma diagnosis.

To this day, I still experience gender bias in medical research and health care. There is so little known about lupus and autoimmune diseases in general (they predominantly affect women), and the treatments are often still not effective nor specific enough, which can come with a long list of dangerous side effects.