Fighting the Stigma of Mental Illness
This is one person’s story; everyone will have unique experiences on their own path to recovery and beyond. Some stories may mention eating disorder thoughts, behaviors or symptom use. Please use your own discretion. And speak with your therapist when needed.
Shannon Caswell resides in Woodbury, MN with her husband and two boys, Declan and Kellen. Recovering from anorexia 21 years ago, Shannon’s mission is to raise awareness around mental illness, to eliminate the stigma and demystify issues that are all too often misunderstood. When Shannon finds time between hockey practices and managing a career, she enjoys writing for her personal blog, Midwestern Mamai, sharing the vulnerabilities and humor of raising a family – and empowering others to do the same.
Lately, I’ve found myself imagining a world where we all understood mental illness around us. Embraced the mindset to talk about it. Celebrated those who recognized it in themselves. Associated bravery and courage equally as we do for other medical illnesses, like cancer. And extended empathy and grace to those struggling through it.
Because the truth is, we are all impacted by mental illness in some way. And the number one reason people don’t seek treatment is because of the stigma. 1 in 5 adults in the U.S. experience a mental illness.
1 in 5!
Look around you. For an average family, at least one person will struggle with a mental illness. Your golf foursome from last weekend – it’s likely one of you struggle with a mental illness. Or how about lunch out with your co-workers the other day – one of them may be coping with mental health challenges.
Let’s break it down for a minute.
Mental health is defined as “a person’s condition with regard to their psychological and emotional well-being.”
It doesn’t mean a person has “gone crazy”. Or that they are “losing it.’ It doesn’t mean someone is “incompetent or unpredictable.” And it sure as hell doesn’t mean someone is “weak and less than.”
I can’t help but wonder if we all shared our story, maybe we could do our part in lessening the shame. Telling our stories from a place of truth. Connecting around something that is SO common. So real. And all too often, so misunderstood.
I can start. Here it goes…
At the age of 37, married to my college sweetheart with two children, I have a beautiful life. It’s hard to believe it’s been 21 years since my eating disorder. It feels like it should be so long ago.
Yet, sometimes it feels like it was yesterday.
From an early age, I always strived for perfection in everything I did. As the oldest of four children, I found comfort in my place as the leader. The responsible one. The rule follower. The people pleaser. I was introverted and quiet. I thrived in art classes where I could express myself without words. I had a lot of friends, but I was often uncomfortable in my own skin.
And at the age of 16, this drive for perfection and acceptance manifested itself into Anorexia Nervosa.
How it started
I remember the summer I went out to nanny for my cousin in Colorado. It was the first time I had been away from home for weeks at a time. And I was so excited. I felt responsible. Independent. Ready to take on the world. And with this, I begun adopting the desire to be healthy. Seemed normal to me.
The truth is, I don’t know how I got there, but I remember becoming suddenly interested in maintaining a newfound healthy diet. Something quite honestly, I had never cared much about before. I remember it started with Grape Nuts. I don’t know why, but they became my new comfort. And I had to have them every day.
I remember becoming obsessed with routine. I loved making breakfast for my cousin when she woke up – or cooking dinners for my aunt and uncle. But, I wouldn’t eat the food, and felt oddly triumphant when others consumed food I had the will power to deny. I built a new normal and quickly became entrenched in a routine. And I never thought it was a problem. It was me. Just healthier.
And that was the summer I never looked at food the same again.
My path to self-destruction
I came home and my mom knew right away. I had lost a significant amount of weight that summer. We didn’t talk about it much. I know she tried, but I denied I lost weight on purpose. I was in control and I could do this perfectly. No one else could influence my eating disorder, but me. It was my secret power. And my ultimate partner in crime.
I went into high school that year. On the outside, I was strong. I had conquered self-control.
But on the inside, I was breaking.
My eating disorder became my oxygen. I was anxious and depressed. My energy was depleted. Social interactions were too stressful and I hated leaving my house – my security of routine. My ability to control how little I ate consumed my every thought. I ate the same things at every meal and never deviated. I cried a lot. I remember sitting in my bedroom wondering what life would be like if I weren’t there.
I had cycled through therapists and none of them were the right fit. My life became a lie. I told everyone I wanted to get better, but deep down, it wasn’t enough. It was never enough.
Medically, my body also began failing. My hair was falling out. My body temperature was so low that I was cold all the time. I had to wear long underwear under my clothing to school. And battery-operated socks to keep circulation in my toes. I lost my menstrual cycle and remember my doctor telling me I may never have children if I didn’t gain weight. I was starving every day; yet, I couldn’t bring myself to eat.
I had the most amazing friends who stood by my side. And they all knew. But we never talked about it. No one talked about it. Because no one understood. It was uncharted territory and it was more comfortable to pretend it didn’t exist. But I knew they knew. And I knew they were there for me the best way they knew how.
And at the age of 37 looking back, I am convinced that had I stayed on that path much longer, I could have died.
I wish I could say there was one moment that turned it around for me. One therapist. A medical side effect that threw me into my rock bottom. But the truth was that I don’t know what it was.
But I do remember moments. Moments that are still so clear. Moments that I know gave me the courage to want to get better.
I remember my mom crying in our home office because she didn’t know what to do. Her telling me that she was going to bring me to inpatient care at the U of M to get help. I remember being scared and ashamed. And wanting to tell her I was sorry for causing her so much pain.
I remember feeling like my life was no longer mine. I had relinquished control. But as exhausted and defeated as I felt, I knew I couldn’t live like this anymore. That this wasn’t the life I was set out to live.
Over the course of the next year, I continued to get help. I learned not to view food as the enemy. I started talking about it more. I opened more with my therapist – and others. I allowed myself to be vulnerable. I read books about others who had gone through it. It made me feel like I wasn’t alone.
I learned to love myself again. And celebrate the small milestones of progress in gaining weight and laughing with friends again.
It’s been 21 years and the truth is, while I have learned to have a healthy relationship with food again, my eating disorder was never about ‘being skinny.’ It was buried deep in the wiring of a beautifully sensitive little girl. A girl designed by a powerful source to be exactly as she was.
I just didn’t know that at the time.
I have the best life. Amazing parents who instilled in me unwavering love and integrity. An incredible husband who knows me better than I know myself. Two rambunctious boys that I can’t get enough of. A rewarding career that makes me feel so alive. And the most amazing friends, family, and community within arm’s reach.
But some days, my path circumvents and I find myself in that vulnerable space. With that paralyzing fear that I am failing. Failing as a mother. As a wife. A friend.
But the difference now is that I recognize that feeling when it lurks back in. Sometimes my husband knows before I do. But I do know that feeling – and more importantly, there’s things I’ve learned help:
1.Get honest with yourself. Around what you’re feeling and why.
2.Own it. Show up. Take accountability.
3.Accept where you are in that moment. Know it soon will pass. And that your purpose is not perfection.
4.TALK ABOUT IT. Write about it. Share it. Sing it if you have to, but get it out.
5.Find a [healthy] outlet. For me, that’s yoga.
6.Laugh about it. Life is too short. Make humor your lifeblood.
We have one life. And in my favorite words from Glennon Doyle,“Life is brutal. But it’s also beautiful. Brutiful, I call it. Life’s brutal and beautiful are woven together so tightly that they can’t be separated. Reject the brutal, reject the beauty. So now I embrace both, and I live well and hard and real.”
I love this.
Imagine a world where we all lived in the hard, and the real every day. Embrace the bravery of stepping out. And owning our vulnerability.
I encourage you to try it.
It’s scary as hell. But oh, so worth it.