Learning to Love and Manage Yourself While Living with Lupus Nephritis

Ady, a 42-year-old woman, shares her experience of living with Lupus Nephritis, an autoimmune disease she was diagnosed with at the age of 12. She talks about the challenges she faced throughout her life, including being on high doses of steroids, finding a job, and managing her condition. Ady emphasises the importance of a support system, taking care of oneself, and pursuing a fulfilling life, especially for those with autoimmune conditions.

Hi, my name is Ady, and I have Lupus Nephritis, a chronic autoimmune condition that I've been dealing with since being diagnosed in 1992. It hasn't been an easy journey, but having a strong support system has been crucial, especially during tough times.

I vividly remember when it all began, with a high fever that lasted almost a month. Since I'd been living with Lupus since I was 12, my teenage years were particularly tough. I experienced hospitalizations due to my red blood count being affected every time I had my menstrual cycle, which took a toll on my studies, health, and appearance. I was always lethargic and unable to concentrate.

As I grew older, my challenges continued. High doses of steroids made me look round and bloated, and my immune system was weak, so even the slightest infection could lead to hospitalization. Going out was always a challenge, requiring an indescribable amount of strength.

Finding a job was also difficult, as most employers did not understand my condition and required long hours, with only a limited amount of medical leave available. It was exhausting to explain myself repeatedly and face the judgment and lack of empathy from others.

Things became even more challenging when I was diagnosed with Nephritis at 29, requiring me to change my diet drastically. It was a difficult time, and some people even believed that Lupus was contagious.

At about the age of 35, I realized that I couldn't be willful anymore. I had flares almost every year, and every time, it took me almost a year to get back to my "original" state again. I couldn't afford to keep going through this anymore, so I had to listen to my body and understand what lupus was. I talked to "her" in me, telling her that this time around, we work together. So long as I was tired, we would rest, and so long as I was stressed, we would take a break. I slowed down my pace, taking term breaks from my part-time degree and no-pay leave to rest. I learned to relax and love my body.

With the support of my family, friends, and specialists, I have learned to manage myself and love myself. I have learned to fall down and climb back up, and never give up. When it comes to working, I have learned to pursue something that brings me joy, preferably in a freelance role.

Living with an autoimmune condition has taught me to take care of myself, manage my diet, and be mindful of my condition to control my symptoms. It's essential to avoid high-stress environments and long working hours, as they can cause brain fog and affect our joints. Instead, moderate stress and short working hours are a good starting point, even if it's not a full-time job.

Despite the challenges, I have learned to empathize with others and live a better life. I can now do normal activities as long as I don't exert myself too much, and I know I'm not alone. Having a support system is crucial in facing life's challenges, and it's something that we all need to go through in life.