"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.
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So I’d be lying if I told you I’m dealing with this amazing on a daily. 🥴 Each day is different. Some days I crumble and have to push myself mentally to not allow the image in the mirror to affect how I feel about myself. Other days I look in the mirror and embrace that Ive lost the majority of my hair and think what wig should I put on today. I think the hardest part of alopecia is being told to relax, don’t stress, it will come back and stressing won’t help. It’s a lot easier said than done as you don’t actually know if or how it will be if it does come back, and not stressing when your identity has changed so much is impossible. But it’s important to remember it’s okay to have down days, it’s okay to feel sorry for yourself sometimes as long as you then reflect on the positives and pick yourself back up. NO ONE is perfect, and imperfections are what makes us all unique whether that’s visible or not. As much as I want to spread a positive message I don’t want to disguise the difficulties of alopecia to make others question why they aren’t coping as well as I seem. I’ve hit highs of positivity but also major lows of rock bottom that I’d never thought my strong mind could able me to reach. Almost like being on a rollercoaster that won’t stop. That is life sometimes, so if you’ve got alopecia and you are reading this, be kind to yourself, you’re doing amazing and every test happens for a reason wether short term or long term. A huge thank you to all my socialites for sharing the awareness of my posts, it doesn’t go unnoticed 🙏🏽 my daily pep talk “you’ve got your sight, sound, limbs, health, family, friends, support network, and much more to be grateful for.. this is not going to beat me” ♥️👑 #alopeciaawarness #bekind
"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.
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𝐓𝐨 𝐦𝐲 𝐚𝐥𝐨𝐩𝐞𝐜𝐢𝐚 / 𝐡𝐚𝐢𝐫𝐥𝐨𝐬𝐬 𝐀𝐧𝐠𝐞𝐥𝐬.. 👑♥️🙏🏽 𝘚𝘵𝘳𝘰𝘯𝘨 𝘱𝘦𝘰𝘱𝘭𝘦 𝘢𝘳𝘦𝘯𝘵 𝘴𝘪𝘮𝘱𝘭𝘺 𝘣𝘰𝘳𝘯... 𝘞𝘦 𝘢𝘳𝘦 𝘧𝘰𝘳𝘤𝘦𝘥 𝘵𝘰 𝘨𝘰 𝘵𝘩𝘳𝘰𝘶𝘨𝘩 𝘵𝘩𝘦 𝘤𝘩𝘢𝘭𝘭𝘦𝘯𝘨𝘦𝘴 𝘰𝘧 𝘭𝘪𝘧𝘦. 𝘞𝘪𝘵𝘩 𝘦𝘢𝘤𝘩 𝘤𝘩𝘢𝘭𝘭𝘦𝘯𝘨𝘦 𝘸𝘦 𝘨𝘳𝘰𝘸 𝘮𝘦𝘯𝘵𝘢𝘭𝘭𝘺 𝘢𝘯𝘥 𝘦𝘮𝘰𝘵𝘪𝘰𝘯𝘢𝘭𝘭𝘺. 𝘞𝘦 𝘮𝘰𝘷𝘦 𝘧𝘰𝘳𝘸𝘢𝘳𝘥 𝘸𝘪𝘵𝘩 𝘰𝘶𝘳 𝘩𝘦𝘢𝘥𝘴 𝘩𝘦𝘭𝘥 𝘩𝘪𝘨𝘩 𝘢𝘯𝘥 𝘢 𝘴𝘵𝘳𝘦𝘯𝘨𝘵𝘩 𝘵𝘩𝘢𝘵 𝘸𝘦 𝘤𝘢𝘯𝘯𝘰𝘵 𝘣𝘦 𝘥𝘦𝘯𝘪𝘦𝘥. 𝘈 𝘸𝘰𝘮𝘢𝘯 𝘸𝘩𝘰𝘴 𝘣𝘦𝘦𝘯 𝘵𝘩𝘳𝘰𝘶𝘨𝘩 𝘵𝘩𝘦 𝘴𝘵𝘰𝘳𝘮 𝘢𝘯𝘥 𝘴𝘶𝘳𝘷𝘪𝘷𝘦𝘥. 𝖬𝖺𝗅𝖾 𝗈𝗋 𝖿𝖾𝗆𝖺𝗅𝖾, 𝗁𝖺𝗂𝗋𝗅𝗈𝗌𝗌 𝗈𝗋 𝖺𝗅𝗈𝗉𝖾𝗂𝖼𝖺 - 𝐖𝐄 𝐀𝐑𝐄 𝐖𝐀𝐑𝐑𝐈𝐎𝐑𝐒 !!!! #baldisbeautiful #alopeciaawarenessmonth #alopeciaawareness #wearewarriors #keeponsmiling😊
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."