Joy M. - Diagnosed at age 29

For years, I knew something wasn’t right with my body, but I didn’t have an answer.

 

My blood pressure was constantly high and difficult to control. I experienced overwhelming exhaustion—days when I didn’t want to get out of bed and days when my body physically wouldn’t let me. I would tear ligaments from the smallest things, develop unexplained rashes, and experience significant hair loss. For years, we thought I simply had a weak immune system.

I became used to feeling unwell without understanding why.

Then, about a month ago, everything changed. My doctors began doing more in-depth investigations, and I was admitted to hospital for further testing. After years of questions and uncertainty, I was finally diagnosed with lupus.

My first feeling was relief. There was comfort in finally having a name for what I had been experiencing. I wasn’t imagining it, and I wasn’t simply “tired.” There was an explanation.

But that relief quickly became fear. My first thought was death. I didn’t really understand lupus, and my mind immediately went to the worst possible place. I was terrified about what this diagnosis meant for my future. Even now, I am still processing it and sometimes struggle to believe that I have lupus.

Lupus has affected my mental health as much as my physical health. Living for years without answers created anxiety and frustration, and the diagnosis brought a new kind of uncertainty. Some days I feel strong, while other days I feel overwhelmed and scared.

One of the biggest things I’ve learned is that you can look completely fine on the outside while fighting something incredibly difficult on the inside. Lupus is, in many ways, an invisible illness. Looking healthy doesn’t mean feeling healthy.

As a teacher, lupus has also changed my daily life. Teaching can be demanding, and I’ve learned that stress and exhaustion can affect how I feel. I’m learning to listen to my body, rest without guilt and recognise that asking for help is not weakness.

I am still figuring out what living with lupus looks like for me, but I refuse to let my diagnosis define my entire life. I still have dreams, goals and a future I want to experience.

I may not know exactly what this journey will look like, but I finally understand my body better than I did before.

I have lupus, but lupus does not have me. 💜