Chris Boerner was diagnosed with Myasthenia Gravis when she was 14 years old. If you don’t know what that is, it’s probably one of the most unwelcome things to happen to a young girl just starting high school.
Myasthenia Gravis is a rare autoimmune disease affecting just 20 in 100,000 people worldwide. With this disease, the body attacks the receptor cells on its own muscles, meaning that when your brain sends a message, your muscles don’t always receive the full instructions of what they’re supposed to do.
The way Chris describes it, “the puzzle pieces don’t fit together.”
Myasthenia makes your muscles easy to fatigue. It can even effect your ability to smile.
Despite this serious physical illness, Chris has led a remarkable life. She has a son that just turned two, and a daughter who’s three and a half – not to mention she’s launched her own business that designs high-quality pill holders for people to take their daily medications in an elegant way.
We recently sat down with Chris to hear her story and learn how she’s created the life she wanted for herself and her family.
What’s it like to live with Myasthenia Gravis?
It affects people really differently, but the most common effect is on your facial muscles. For over 10 years it looked like I was crying, I couldn’t smile, and I couldn’t swallow. It’s not a disease that advertises you’re sick, and so the fact that you can’t smile is misinterpreted a lot of the time. Even people in your family are quick to make comments about it, and that hurts a lot.
I’m really stable right now – I never thought I would be as healthy as I am. I can smile again, which is amazing, and I can talk without slurring my speech, some things I never thought would happen. But I try not to take that for granted.
Knowing that autoimmunity runs in families, were you concerned about having kids?
Starting in high school I started taking heavy doses of immunosuppressants, and so I remember having a conversation with my doctor that I might never be able to have children. And there aren’t a lot of studies on how these drugs affect pregnancy, since nobody wants to be the one who takes the risk. But getting off the medication wasn’t really an option either, because I wouldn’t be able to swallow, or be able to lift my head up, and I wouldn’t be very healthy for a pregnancy.
And with Myasthenia specifically, infants who’ve been sharing blood with their mother before they’re born can exhibit signs right when they are born even if they don’t have it. So both my kids had to be in the NICU for observation because they would have trouble breathing. It still feels like we took a gamble, but fortunately everything worked out.
Can you explain what led you to become an entrepreneur?
Well, I still take immunosuppressants, and I also take a medication that’s specific to Myasthenia Gravis about three times a day. That’s how Cielo came to be, because I always have to have my medicine with me.
Tell us more about Cielo Pill Holders and the message you want to send with this product.
The experience of needing to have medication with you, it just sucked. Everything out there for pill holders is just junk, and it breaks, and it reminds you you’re sick. I wanted to turn that idea upside down, and give people this unexpected moment of joy and beauty in their lives that came from their illness, they get to experience this because they have this illness… For me, that feeling is being outside and looking up at the blue sky and feeling like there’s so much to appreciate in life – and who knew a pill holder could be one of those things.
What would you say to others who are coping with such a serious condition?
Strong connections with the people around you will always matter the most. That’s what I would say to someone, not that it will get better, or ‘hold out,’ or ‘you’ll get through this.’ It might always be hard, but it’s about the people and the connections you’ve got. So focus on relying on those people, and bringing people into your life who can help hold you up even when it gets hard.
I’ve drawn inspiration from women that keep going no matter what, who’ve taught me that the future is going to come, no matter what, and so you just have to stick with it. Keep going, and you’re going to get there, even if you don’t know where it leads.
It sounds as though you’ve almost learned to appreciate your disease.
I don’t think a lot about Myasthenia Gravis these days in terms of how it’s affecting my health, but more in terms of how amazing it is that 20 years later it led to such a cool spot in my life where I never thought I would be. I would not be living this life if I hadn’t been diagnosed with Myasthenia Gravis, I’m sure of it.
This interview was edited for length and clarity. Also check out this Amazon exclusive feature on Chris’s journey!
This post is part of a series dedicated to women with autoimmune diseases who are leading fulfilling lives.
April 18, 2018
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