Read time: about 9 minutes · 🎧 Audio version available at the bottom
Content note: This story includes descriptions of chronic illness, mental health struggles, and suicidal ideation. Please take care while reading.
For as long as I can remember, I had this nagging feeling that something was wrong with me. I mean really wrong. I felt as though I was a foreigner in my own body, like my insides were speaking to me in an unfamiliar tongue. What I know now, that I didn’t know then, is that my body wasn't just talking to me, it was screaming. I know now exactly what it was trying to say.
September is Pain Awareness Month.
In contrast to October’s Halloween, a time to masquerade as ghouls and goblins and become someone else, September is a time for those of us who have suffered in pain and silence for the rest of the year to take our masks off and be known.
As I lower my mask now to show you parts of me, I ask that you hold them with care. Some of the parts I’ll show are healed, some have grown scar tissue around them, and some are still very raw. But it’s important to be known; it might be the most important thing we can possibly do with our lives. I hope some bit of my story might help someone, and if it doesn’t, I know it helps bits of me to tell it.
The human body really is a spectacular thing.
I have had the privilege to feel what it is like to grow and sustain life, twice. I watched my brother defy all odds after doctors told him he would never walk again. I have also experienced firsthand what it is like to live in a body that is very ill.
In 2019, I was diagnosed with Cushing’s syndrome. Cushing’s is a hormonal disorder. Mine was caused by a tumor on my right adrenal gland that made my body oversecrete cortisol, the fight-or-flight hormone.
A little crash course on cortisol: not enough and the body shuts down; too much for too long, as in my story, and your bones, your organs, essentially all the fleshy bits that make up you, start to break down and die.
Let’s wind the clock back a bit to my early twenties.
At this point in my life, I had been to countless specialists and had nearly filled my frequent flyer “punch card” to the ER. But time and again, doctors brushed my symptoms off as “stress.”
To give the doctors some credit (and I rarely do), they weren’t entirely wrong. I did have an incredible amount of stress.
When I was 13, I started working in the restaurant industry. Over the course of my career I worked in some very fast-paced, high-end kitchens all while I was battling various strange and painful symptoms. So when my doctor's said what I was experiencing was caused by stress, I was inclined to believe them.
We can’t talk about what was happening with my body without also discussing what was happening with my mind.
My mental state was about as solid as a piece of Swiss cheese. And not in a cute manic pixie dream girl way, but in a full-on Girl, Interrupted sort of way. By my late twenties I had been hospitalized multiple times for suicidal ideation. I had been misdiagnosed and mis-medicated too many times to count.
I felt hopeless.
I wasn’t just at the end of my rope; I had run out of rope three hospital trips earlier. So, at 28, I left the career I had fought a decade for and the people that I loved, and moved across the country.
I was convinced, or maybe I just hoped, that if I moved everything would get better, that the stress of a big city was too much for my small-town heart.
The problem was that when I moved across the country my body and mind moved with me. Even worse, somehow the move escalated my symptoms. My body was in full-blown rebellion: panic attacks, insomnia, relentless fatigue, and a nervous system that felt like it had been set on fire. No matter how much I tried to “start fresh,” I couldn’t outrun what was happening inside of me.
To understand why this hit so hard, let’s go back again to my early twenties.
I lived life at a mile-a-minute pace. I’d work 12-hour shifts, walk four miles home, and then for dessert tack on a 2-mile run or a yoga session. I took my diet and exercise routine very seriously, almost to the point of being militant. So it was a complete shock when, after moving, I gained nearly 100 pounds.
I went from being able to run eight miles a day to barely making it up a hill. My face expanded like a puffer fish. Purple stretch marks slithered across and consumed my flesh. Dark hair sprouted under my chin. I developed a hunchback.
It felt like someone had put some dark voodoo magic on me, and I had no idea who was looking back at me in the mirror.
I was beyond infuriated. I did the “right” things. I drank the damn açai smoothies with chia, I held my nose up to McDonald’s, and I did all the proverbial yoga. I spent so much time and money on my “health,” and when it all came crashing down, it felt like the biggest scam.
I was cheated, and I wanted my money back.
What I didn’t know then was that the strange symptoms that had stalked my organs for a decade were now screaming at me, finally revealing themselves on the outside.
In one simple Google search, thanks to some prodding from my husband, I was able to piece together what doctors never could. After years of specialists smashing puzzle pieces together like cavemen, I was suddenly staring at a crystal-clear picture that spelled out Cushing’s.
The next part of my journey was long and brutal, but for the first time in ten long and confusing years I had answers.
This chapter of my story finally had an ending, and it was a really good one. For the very first time in my life I had validation.
I had hope.
My surgeon told me that, by the size of the tumor, it had most likely plagued me for ten years. Ten years of being made to feel like it was all in my head. Ten years of gaslighting myself. Ten years of pain.
Here’s the truth I think anyone who has lived with illness or pain knows: the deepest pain comes from ourselves.
For so long I lived with an ache worse than any of the pain my body experienced: the belief that I was the problem, that I wasn’t good enough, that my loved ones would be better off if I wasn’t around.
I now know down to the marrow that this is a lie, but man was it a hard lesson to finally embody.
Before I leave you to put my mask back on and re-enter the world as mother, daughter, sister, and friend, I want to take another minute to be known, and maybe see you all that pain.
Pain does not define us.
It never has and it never will. But sometimes it weaves its way through our stories in a way that binds us to one another, so that we may take our masks off in times like these and know what it feels like to be fully seen.
And in being witnessed in this way, it may just be the most important thing we ever do with our lives.
A Final Note
Our bodies are not our enemies, even though it may feel like that right now. If you’re a medical mystery like I was, keep fighting. Keep searching. Keep trying new doctors. Keep reading. The answer is out there. Your body is just waiting for you to find it.
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Resources
If you are struggling, please know you don’t have to face it by yourself. Here are some places you can turn for support:
National Suicide Prevention Lifeline (US): Dial 988
Crisis Text Line: Text HOME to 741741
NAMI HelpLine: 1-800-950-NAMI (6264) or text "HelpLine" to 62640
RAINN (Rape, Abuse & Incest National Network): 1-800-656-HOPE (4673)
For international readers: find hotlines by country at https://findahelpline.com
Have questions? You can always email me at heather@totem.org.
If you'd like to hear more of my story, take a look at my bio and all of my upcoming Space here.
And if you’re living with chronic pain or illness, we created Still Sick, Still Here, a Space created just for you.
Thank you so much for taking the time to hear my story, I can't wait to hear yours.