Although vitiligo is usually visible to others, the emotional impact of living with this autoimmune skin disease is not always outwardly apparent. When Monwabisi began developing signs of vitiligo, members of his rural community were perplexed, and sometimes unkind, about his appearance. Undiagnosed and struggling to feel comfortable in his own skin, Monwabisi realized that he needed to look beyond his small town for answers. In his story, Monwabisi reflects on being diagnosed with multiple autoimmune diseases and learning to embrace his “perfect imperfections”!
Monwabisi's Story
“Vitiligo is exotic, beautiful, and unique -but for me, it’s “perfect imperfections”!”
My journey has not been easy. My vitiligo appeared when I started high school in 1991. I can remember my teacher making fun of my appearance, saying that my pink and peeling mouth looked like that of an alcoholic.
Growing up in a small rural town where there are superstitions and beliefs, people said a lot of things about my skin. To try and find answers, I visited traditional healers and a local doctor who had a practice in a nearby village. That doctor got it wrong and said that I had been poisoned. To be diagnosed correctly, I had to go to an academic hospital in another province. That was made possible by my aunt, who was a nurse at the time and was also diagnosed with vitiligo years after her retirement.
My treatment started with topical creams. Later, PUVA therapy became necessary because my skin was not responding. At one point, I had to do this therapy three times a week.
This was emotionally tough for me. I cannot say I enjoyed my teenage years like other boys. Low self-esteem and fear of rejection were part of my high school and post-tertiary life, and that has affected my confidence and social life.
Just when I had accepted and embraced my condition earlier this year, I was diagnosed with not one but two other autoimmune conditions: Rheumatoid Arthritis and Hashimoto’s thyroiditis. Now, I have no choice for managing my pain and other symptoms: I have to take medication with immunosuppressants. Surprisingly, within a few months of starting this new medication, my skin is starting to heal and I am beginning to have less back pain. The medication has its side effects, but so far the benefits outweigh them.
My view of available vitiligo treatments is that they treat the symptoms, not the cause. If the focus is on finding a cure for the cause, the healing will happen on its own.
In South Africa, vitiligo is not classified as a chronic condition. The treatments are expensive and not covered by medical aids- however, other autoimmune conditions are covered. Support from family and friends is very important, especially if the person with vitiligo is a child.
“Support is essential, especially for a person who deals with invisible pain which might lead to depression and low self-esteem.”
– Monwabisi Mabude
The views and opinions expressed are those of the author and do not necessarily reflect the views and opinions of the Global Autoimmune Institute. The experiences and health outcomes described in this article are unique to the author and do not serve as medical advice.
Interested in sharing your story of autoimmune disease or chronic illness? Head over to How to Tell Your Chronic Illness Story for prompts and tips!
