Graphic Photos of Woman's Life With Muscular Dystrophy Aren't Meant to Inspire You

woman with muscular dystrophy
hollywiththemd/Instagram

Instagram is the platform of choice when it comes to showing off your best moments and curating the image that you want others to see. But 25-year-old Holly Warland uses the social media platform for just the opposite. Under @hollywiththemd, she gives others a candid, unapologetic, and unedited look into what it's like to live with muscular dystrophy -- no filter.  

  • After being misdiagnosed with scoliosis, Australia-based Warland was diagnosed with limb-girdle muscular dystrophy (LGMD) at age 11.

    Her disease impacts the voluntary muscles around her hips and shoulders. These conditions will continue to progress as she ages. Currently, there are no definitive treatments for LGMD, and she's accepted that she'll soon die. 

    "I just want to be raw," she tells CafeMom via email. "I use no filters. I'm not looking to be your next Instagram model flogging teeth-whitening."

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    "It's not about fame for me, it's about showing as many people I can that disability and dying is a rough, ugly process and that maybe we need to all start talking about it a bit more honestly," she says.

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  • She came up with the idea to document her life on Instagram when she "caught a glimpse of herself after [she'd] vomited."

    "I was gaunt, pale, and sweaty and I realized that I'd never seen a disability advocate show that side of themselves," she says. 

    "We're forever portrayed in the media as smiling and happy to be there!" she explains. "I wanted the opposite of your sweet national news ending story about someone in a wheelchair doing a triathlon."

  • Her account is truly a testament to this, and she doesn't hold back in letting people know what MD really feels like.

    She posts images, many taken by her photographer partner, of herself dry heaving while nauseous, or of the "remains of [her] sinewy bicep." 

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    "I'm not doing inspiring things," she continues. "My day consists of medication to fight off nausea and chronic pain and maybe a walk in the park if I feel up to it."

    She also had to leave her PhD program because of her MD, and let go of her dreams of becoming a neuroscientist, which she calls "heartbreaking."

  • But she has gained perspective that many of us won't. "MD has definitely made me more cynical and less tolerant of other people's problems," she says.

    "I'm deeply grateful when my body feels healthy enough to visit my family who are 20 minutes away," she says. "My body is just a machine that's trying to work, so I can't stand hearing about women obsessing over a few extra pounds or wrinkles, etc. Your body works! You can get a job, leave the house daily, interact with people every day. I can't, and it's not my choice, so don't make it yours."

    They're sobering and inspiring words, even if she doesn't mean for them to be. 

general health illness