Bearded Lady Blues
For a woman, it's a most heart-breaking condition.
Stephanie, 35, has polycystic ovarian syndrome, a hormonal illness characterized by irregular or no periods, acne, obesity, and excess hair growth.
Women with PCOS are at a higher risk for obesity, diabetes, high blood pressure, heart disease and uterine cancer. There is no cure. Some women have just one or two symptoms.
Others, like Stephanie, have many.
It's the excess hair growth that has destroyed her young life.
Bluntly put, she has the kind of full beard you'd expect in a man.
"I feel like freak," she said in a softspoken interview at her grandmother's tiny Scarborough bungalow this week.
She's tried everything, she told me tearfully:
Bleaching, sandpaper buffer, shaving, and waxing. Nothing worked. And the last two left her sensitive skin bleeding and scarred.
"Waxing was the most painful thing I have ever experienced in my life," she said.
Even after she shaves, there is the shadow of a beard.
She would like OHIP to pay for laser hair removal. One estimate set the price at around $6,000. OHIP turned her down on the basis that the hair removal is "cosmetic."
She can't find work.
"Nobody is going to hire the bearded lady unless it's for a job in the circus," she told me.
Stephanie and her husband had jobs managing an apartment building. They had to give it up because Stephanie could no longer stand the stares of tenants who came to the door. When they lost that job, they lost their apartment and are now living in public housing, so $6,000 for laser hair removal is out of the question.
Stephanie doesn't want her last name or current picture used. She is fiercely protective of her young sons and won't go to events at their school for fear they'll be teased about her appearance. She rarely goes out. When visitors come to the door, she hides.
The condition worsened after the birth of her second son. Before that, she'd enjoyed coaching her older son's hockey and soccer teams. Now she won't even go to their games.
Stephanie played hockey herself for 17 years, but gave up when her appearance changed. Last year, she tried again but quit after three games. She thought the helmet would hide her beard, but found the dressing room with other women just too embarrassing.
A ministry of health spokesman said OHIP doesn't usually pay for such cases.
"Generally, OHIP does not cover the removal of facial hair," said ministry spokesman Mark Nesbitt in an e-mail.
He added there are circumstances under which an individual, with the assistance of a physician, can apply to the Medical Eligibility Committee for review of an individual situation.
"Each case is decided based on information specific to each individual situation," he said. Stephanie was turned down.
Her doctor says that in extreme cases, OHIP should cover hair removal.
"I think we should not underestimate the emotional suffering of someone with this degree of hirsutism," Dr. Krisanne Mendelssohn said.
At a time when the province is considering restoring funding for sex change operations, it's outrageous this lovely young woman is denied funding for a very real medical condition.
Stephanie is funny and warm and articulate. And she yearns to be part of society again.
And sure, it's not a life-threatening condition. But it's one that is destroying her.
"I don't want to look like a movie star," she says. "I just want to be normal."
I thought we lived in a civilized society that protected people like Stephanie, whose lives have been turned upside down by a disease over which she has no control. I thought that's why we paid our health tax.
I guess I was wrong.