A rare disease stole her strength and independence, but not her purpose. Here’s how she finds joy amid all the hardship.
Mickey keeps a positive attitude through her battles with Ehlers-Danlos syndrome.
Michelle Sorensen—she prefers that you call her Mickey—has been through a lot. That becomes apparent after just 10 minutes on the phone with her. She talks about her health obstacles, what she’s overcome, and the battles she’s still facing, with so much maturity and strength. It’s the unwavering voice of someone who has endured plenty of ups and downs, and along the way has found peace with the cards she’s been dealt. Even when Mickey tells me her age, I don’t quite believe it. She’s just 18.
"When things get really hard, you just keep fighting and you find ways to keep a positive attitude," she says. "You have to believe that there’s still joy to be found through all the hardship."
Mickey has EDS, or Ehlers-Danlos syndrome, a rare genetic connective tissue disorder. "The connective tissue is too loose," she explains. "It should be the glue that holds your body together, but with EDS it’s very loose and fragile." The condition has affected everything from Mickey’s autonomic nervous system to her joints—she dislocates up to 30 joints every single day. But she says she’s been most frustrated by her digestive issues. "My stomach is paralyzed and now I need a feeding tube," she says.
Although she was likely born with it, her condition wasn’t diagnosed until she was 14. "People with EDS are really flexible because of our loose joints," she says. "As a kid, we used to joke in my family that I didn’t have bones. I could do a bunch of party tricks. I was a little contortionist."
When her doctors first suspected that she might be suffering from a connective tissue disorder, Mickey dismissed the idea out of hand. "I told them, 'No, that’s a very severe illness, I don’t think that’s what’s going on,'" she remembers. "I always downplayed my symptoms, because I was in school and didn’t want to be sick." When it became clear that she did, in fact, have EDS, she sank into shock and denial.
Mickey often has to wear a special mask, called a vogmask, to stop her body from going into anaphylactic shock.
Four years later, she hasn’t just accepted her diagnosis but has become a one-woman champion for EDS awareness and survival. She writes and talks candidly about her struggles on her wildly-popular Instagram and YouTube pages—the latter has attracted more than 1 million views on some videos. She shares it all with unflinching vulnerability, even when she hits the occasional bump in the road during her health journey.
Mid-May 2018 was an especially terrifying time for Mickey. She went into anaphylactic shock four times in just 36 hours, and after numerous trips to the hospital, she now wears a special mask (called a vogmask) whenever she goes outside. She’s documented it all online, even when it’s required an uneasy balance between abject fear and hopefulness. "Thankful that as I’m coming into this summer I’m no longer worried about dying," she posted on her Instagram.
Even Mickey is amazed at her online popularity, as she can still vividly recall the days of feeling self-conscious and not wanting to be too visible in public. "Everywhere that I went, people would stare at me because I had this tube in my nose," she says. "It only got worse when I got a tube in my stomach." But when you’re connected to a 24-hour feed, Mickey says, you either never leave the house or you learn to embrace what makes you unique.
"I got a cute little backpack to carry around my feeding tubes and bottles of Kate Farms," she says. Kate Farms has been her primary nutrition source for almost 2 years now, and she credits it with saving her life. "Nothing else was working," she says.
"It’s really fun and stylish," Mickey says of the backpack. "It doesn’t say 'Please don’t look at me.' If anything, it says just the opposite. It feels more like me," she continues, with optimism in her voice that seems to never waver. "It took a while, but I’m feeling more like me every day."
Here are just a few things Mickey learned from being one of the bravest teenagers we’ve ever met.
After her diagnosis, Mickey’s life changed in dramatic ways. "I had to stop going to school for a while," she says. "I couldn’t dance or figure skate anymore, obviously. It felt like my life had been taken away from me, and I was sad all the time. One minute I was this normal teenage kid, and now I’m sick and everything’s gone."
How did she crawl out of that dark hole? She stopped dwelling in the despair of what she’d lost and started looking around her to see what she still had. She’d never get her old life back entirely, she decided. But what were the things that hadn’t been taken away, that she could still enjoy every day just by being alive and on this planet?
"It’s funny, but you become one of those people who are amazed at all the things you used to take for granted," she says. "If it’s sunny outside, that makes me happy. I focus on the joy that’s just waiting to be found in today, despite all the pain. I’m actively looking for joy. It wasn’t always like that."
Because EDS is so rare, Mickey’s doctors were often at a loss about how to treat her. "I remember feeling so hopeless because even my doctors didn’t understand," she says. "One thing I tell people, regardless of what medical challenges they’re facing, is that there are always more doctors out there. You just have to keep looking."
When even specialists turned her away, claiming, "There are no more treatment options left for you," she refused to accept that as the final word. "You have to find doctors who are willing to look outside the box and try alternative treatments that other doctors are either scared of or want to stay away from because it’s foreign to them," Mickey says. "I went looking for a doctor who would say to me, 'Yes, let’s try this unknown thing that I’m just learning about for the first time and I have no idea if it’s going to work.' They’re not easy to find, but they’re out there."
Mickey didn’t begin talking about her EDS on social media because she had aspirations of becoming Internet famous. She first went public with her story on Instagram and YouTube as a way to "find friends who understood," and eventually, as her audience grew far beyond Minnesota, to connect with people facing similar health issues. This was not just a social media following that could identify with her, but a community open to pooling their resources.
"Even if we don’t live near each other, that connection can be so helpful," she says. "We talk about doctors and what treatments worked for them, and they can be like, 'Maybe this is something to try or at least bring up with your doctor.'" Their input can be even more helpful than what she gets from her medical team, she says. "I know my doctors have my best interests in heart, but it’s hard if they don’t live with the condition themselves. They don’t know the little things that might help you."
One of the main things that sustains Mickey is her faith. "He’s brought me this far," she says of her belief in God. "And I believe He has a plan for me. If I’m not done, then my story isn’t over."
What her story evolves into, well, she’s not entirely sure just yet. It bears repeating that this remarkable young woman is just 18. But she has her sights set on a bright future. Mickey intends to continue to grow the global reach of her Instagram and YouTube pages, which she thinks could have a larger impact than just on people living with or curious about EDS.
"After I hit that breaking point of being really sad and then I learned to find joy again, I realized I wanted to share this message," Mickey says. "A lot of people are going through similar things. Even if they’re not sick, if you’re alive in this world, there’s something you’re struggling with."
She decided long ago that if she had to experience so much pain and fear—during her recent health scare, she posted that she was afraid to fall asleep "because what if I stop breathing?"—there had to be a reason for it. Maybe there was something she could learn from her experiences, the good and the bad, that she could use to inspire others down the line. "Everything I’m going through now, it’s just adding up to the story I’ll be able to tell later," she says. "I really hold on to that."
There’s an old saying that Mickey tells herself occasionally when it all seems like too much to bear. "It goes: 'You’ve made it through 100 percent of your bad days so far,'" she says with a laugh. "I really like that. Because you know what? It’s so true. Of all the days I’ve been alive, zero of them have killed me. It’s easy to take that for granted sometimes."
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