Woman with rare disease battles scorn and stares

Megan Hunter's rare disease means she has to wear a mask to keep herself alive. She did not expect to be openly mocked and laughed at because of it.

Johannesburg resident Hunter, 29, looks healthy but has severe Myasthenia gravis, an autoimmune disease that attacks the connections between nerves and muscles. Her medications weaken her immune system, meaning she needs to wear a mask in public to reduce her exposure to germs.

She occasionally uses a cane, a hint that something may be wrong, but people still stare at her.

Hunter recently posted a comment on social media about wearing the mask: "As I was waiting in the queue at a pharmacy, the young girl in front of me turned around, looked at me and started to laugh. She then turned to her mother/older sister and said: 'You have to see the girl behind us wearing a crazy mask. What does she think this is?' The older lady very obviously turned around, gave me big eyes and immediately burst out laughing. For the rest of the time that they were being served, they kept turning to look at me and discussing me ... I wanted to cry."

She told The Times that she sometimes avoids wearing her mask now.

"I have definitely taken to not wearing it as often as I should as there are some days I just cannot handle getting odd looks.

"Last week, when I flew to Cape Town some man asked if I thought I was Darth Vader as I was walking through to the exit. I just replied that I wish it was that, as he carried on walking and laughing.''

Rare Diseases SA founder Kelly du Plessis said people with invisible illnesses often face stigma as even loved ones do not believe they are ill, accusing them instead of just seeking attention.

Many patients or parents of sick children feel they have to explain and defend themselves, said Du Plessis.

"Please, be aware of those fighting a battle that you know nothing about. Ask questions before you judge," said Hunter.