LIVING WITH LUPUS | Ashley and Melissa B.

My lupus symptoms began in 2018, at the age of 9. I struggled with painful rashes, mouth sores, and joint pain that often kept me from enjoying time in the sun or even speaking and eating comfortably. These were all the signs that led to my pre-diagnosis of lupus. Over time, bloodwork displayed markers for lupus.

My symptoms evolved over the next couple years where I also encountered severe headaches that prevented me from moving and being exposed to any form of light. They would last hours and I would experience these almost every day. As my headaches progressed I also went through these ‘episodes’ where I would feel very faint-ish and weak at times. These episodes foreshadowed how often I would feel dizzy and would have to stop what i’m doing because i felt like I was going to faint.

I was undergoing these intense symptoms in and around the pandemic time period. I am now 15 and although I still struggle with these symptoms daily, I am thankful that they are more mild than before. Lupus is a disease that causes flares when you least expect it. Due to the fact that it is out of your control, you can only take it day by day, try your hardest to have a positive attitude, and stay optimistic and ambitious.

My lupus journey began at the age of 3. What began as normal childhood activities quickly turned to crawling, crying, and inflamed skin. My parents had no idea what was happening, they took me to our family doctor and he said it was just growing pains. At the time my mom was the only one in my family that had lupus and she knew this was not normal and not just growing pains. So my mom got a referral to the lupus clinic in Sick Kids hospital. They began testing and over some time, I kept testing positive for all the lupus markers.

Throughout her childhood, Melissa faced joint pain, mouth sores, fatigue, and headaches, making activities like gym class or playing sports painful and difficult. It always made me think to myself, “Why can’t I be like the other kids and play sports without feeling pain?” That was always a constant thought.

As the years went on the joint pain still continued, some other symptoms that started to occur were mouth sores, constant fatigue, daily headaches and butterfly rashes when in the sun. The sun wasn’t my friend. Whenever I would be in the sun I, always had to make sure I was eating and making sure I was drinking a lot of water to prevent any sun stokes. In 2018 I did suffer a severe sun stroke.

This year, my joint pain became worse. The pain migrates throughout but it settled in my wrist . I couldn’t move, I couldn’t write, I was not even able to make a fist without pain occurring.

The biggest issue with the pain in my wrist was that it restricted me playing the sport that I love, volleyball. I was not able to bump or attack the ball as well as I could before the pain started. I also couldn’t move as fast as the other players without joint pain attacking my legs-knee and hips and limiting me to perform to the best of my abilities.

The stigma of “you don’t look sick” is true! To say, if you saw me in person you may think I look like a normal teenager, and that’s what a lot of people think, even my friends. But once I tell them I have lupus, they think it’s something contagious and will distance themselves from me and I feel bad about that.

I am now 15 and my lupus is relatively stable. I still have constant fatigue, joint pain, my back still aches but it’s nothing that will stop me from enjoying my life and not having it hold me back from doing anything I want to do.

Having lupus really opened my eyes on how precious life is and has made me want to help other people especially kids going through what I’m going through in the future.

Lupus can set you back in your steps, and make it seem like your goals are impossible and out of reach. Nothing is impossible when you just believe and not let it run your life. Lupus won’t hold me back!