“It’s like losing your identity. You look in the mirror and it’s a different person.”
Reality TV star and fashion designer ZaraLena Jackson shares her life online with hundreds of thousands of followers.
So when her hair began to fall out just six weeks ago, she had a decision to make.
“At first I thought ‘I’m coming off social media'”, she tells Radio 1 Newsbeat. “The pressure was going to break me.”
But she decided to stay, and tell her followers about the clumps of hair that were falling out when she was in the shower.
It was only five weeks before most of the hair on her head had gone as well as all of her body hair.
“The platform I have is based on having this lifestyle where I’ve got everything – looking good and having the best hair extensions, all of that,” she says.
Despite that, ZaraLena says the response to her posts where she spoke about developing alopecia was “amazing”.
“The amount of girls I had messaging me, whether they had lost hair because of chemotherapy or alopecia was crazy.”
What is alopecia?
In short, alopecia is the loss of your hair.
It can be caused by stress, illness or deficiencies among other things and can develop at any point in someone’s life.
It’s thought to affect at least 65,000 people in the UK.
There are a number of different types of alopecia, some of them causing less loss than others. Depending on which type you have, your hair could grow back eventually.
ZaraLena doesn’t know why she developed alopecia, and she’s having tests done to determine which type she has.
Her eyebrows and lashes are “starting to fall out”, but she’s not lost them completely yet.
Although it didn’t fit the typical influencer look, ZaraLena made the decision to shave her whole head.
“Life’s not perfect, but I can embrace it.”
She wants influencers to be more honest about their real life struggles.
“This is real, this is what girls are going through. So often they’ll go on Instagram, and see peoples’ perfect lives and perfect hair.”
Although she’s spreading positivity online, alopecia did knock her confidence.
ZaraLena says her first worry was whether her partner would still find her attractive.
“I wasn’t worried about anyone else seeing it but him. Hair is a very feminine feature, and I didn’t know if he’d still fancy me.”
But she says he has been “amazing”.
“He calls me his little kiwi because my head is fluffy.”
She says that some days she feels down, and can’t even face getting out of bed.
“But I’m surrounded by the best people, and I’m trying to keep a positive attitude.
“I don’t want people to look at me and feel sorry for me.
“I am bald, bald is beautiful. Life’s way too short to worry about hair.”