Let’s Talk Lupus: Conversations with Macenzie|Caroline M.

Let’s Talk Lupus with Macenzie

My Lupus Story with Caroline M.

At twenty-eight years old, Caroline Pereira Melo carries herself with unshakable confidence that you would expect someone twice her senior to bear. For Caroline, positivity is her key motivator, especially keeping her body active when the going gets tough. Her body has been a point of contention and triumph, and like any double-edged sword, it has been a source of great pain. 

“It was a huge step for me to love myself again with lupus,” she reflects. “But since learning to love my body, I’ve been in a much happier place.”

Caroline was born and raised in Montreal, Quebec., and had a happy and normal childhood until she was around 12. Caroline was just starting high school, when she started to experience strange and intense bouts of paralyzation on the left side of her body.

“My arm was moving on its own. I didn’t know what was happening.” Caroline was admitted to CHU Sainte-Justine Hospital for Children. Immediately, the doctors recognized something was wrong. Initially, Caroline was admitted to the depression and mental health ward of the hospital. “My mom thought maybe because I was starting high school I was having some sort of anxiety attack.” But, after two weeks of hospitalization, Caroline was diagnosed with lupus.

“I was very sick. They ran a lot of tests on me quickly.” Like many others who received a life-changing diagnosis, Caroline’s world flipped.

“I remember having so much anger. I felt so angry and so sad. I was going through so many emotions.” Because she was so young, Caroline did not fully understand what her diagnosis was or what it meant. Caroline would refer to lupus as ‘her monster’. “I hated myself and would say ‘I hate this monster in me,’ I couldn’t understand.”

To treat her lupus, Caroline’s doctor prescribed her steroids to ease her symptoms. The medication caused young Caroline to gain a lot of weight in a short period, – and not to mention in a very pivotal time in her life. “I was bullied badly in high school,” she recalls. “My whole teenage experience was ruined because of lupus.” This time in Caroline’s life was very dark, and she significantly struggled with her mental health. “I wasn’t happy, I wanted my life to end…I didn’t recognize myself at all.”

And, although her self-esteem was deteriorating, her lupus, for the most part, was stable.

At 18, Caroline was dispatched from her specialist at Sainte-Justine Hospital. And she decided to try and ‘fix’ her life. She stopped taking all her medications and developed a strong passion for working out and physical activity. “I lost a lot of weight and had to get excess skin removal surgery,” she says. “I still have the stretch marks and scars but that is okay.” Eventually, Caroline started to feel more optimistic. Her body finally felt like hers again. During this time, she didn’t open up to anybody about her illness to avoid judgment or pity. As far as she was concerned, lupus was something of the past and to forget. “It was like it was finished,” she says. 

“But, lupus is for life.” 

Around Christmas 2020, Caroline started to experience the dreaded symptoms of lupus once again. Twelve years had passed but the fear and pain felt all too familiar. Again, the whole left side of Caroline’s body became paralyzed and she lost mobility. “My face also became paralyzed too.” Her parents hoped there was another explanation for her state, especially right by the holidays, but Caroline knew right away that her ‘monster’ had returned. “They were in denial,” she says.