Updated: May 28, 2020
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Chugging right along through my personal introduction.
So you know where I'm at and where I've been, we're briefly going through all the ways I've learned to feel like a pre-determined invalid.
Let's talk about getting mysteriously ill in your "best years of life!"
It's time to chat about stress versus body versus food versus stress versus body versus food versus stress.
Overachiever: The flight and the crash
Not talking eating disorder here, though that’s always a smoldering ember in my brain. I’m talking about when chronic stress finally catches up with you and forces you to stop running.
That’s what happened to me after escaping my childhood home after putting in my years at community college. I went off to a real university as a hard working transfer student and worked myself to death - almost literally.
I was at the top of every class. I was doing PhD level research as an undergrad. And I was funding the entire thing myself, making $8.50 an hour.
Near the end of my undergraduate degree everything fell to pieces. I had a lot of plates in the air at the time; finishing my bio/chem degree in a 2 year transfer program, working at the cancer cell lab damn nearly every day, figuring out what advanced degree to pursue next, struggling to afford to eat, trying to be less alone...
Well, it all got to be a lot.
More specifically, I think my 23 years of unaddressed past trauma, depression, and anxiety combined with all these new, mid-twenties career and relationship stressors, "got to be a lot."
I was occupied for every moment of every day. If I had a spare moment, it was because I had forgotten something else that I was supposed to be doing. There was no time for myself or room for basic functions like eating, showering, and sleeping in any given day.
And I kept pushing, anyways. Studying until my eyes felt like they were bleeding. Spending all my time working towards one goal. Abusing myself the whole way.
Physical illness; mysterious chronic sickness
With everything going on, I felt myself slipping mentally. First it was the fixation and anxiety, then the depression…. then everything falling apart because I couldn’t fucking sleep.
Soon, I felt scattered. I was exhausted all the time. I couldn’t focus. I couldn’t care. I ached every moment. Shortly thereafter, I found myself getting sick in weird, unpredictable ways.
Like the many severe sinus infections I suddenly had for the first time in my life. Those resulted in many rounds of antibiotics. Great. Or the time I had a random gum infection (???) that burst in my mouth at work and smelled like cow shit. Or the violent migraines that started including loss of vision and physical shaking.
As someone who had always been completely healthy - my physical condition suddenly deteriorated without warning. It was something new, all the time.
Pretty soon, I was more than just random-assorted kinds of sick… I was suffering from consistent symptoms on a daily basis. After that, life quickly became small and my head became fucked.
I was so tired all the time, I rarely felt up to getting out of bed. I couldn’t think or see straight, let alone move with coordination. I ached everywhere. I had horrific tension migraines with blinding auras. I had daily acid reflux that brought me to tears and woke me from dead sleeps. My stomach was distended to the point of looking pregnant. My guts felt like they were going to burst out of my body. My eyes itched and burned all the time. My body was swollen everywhere. My movement became stiff. I became sensitive to touch, as if it was painful on my tissue.
Most significantly, I stopped feeling any digestion taking place. My stomach never growled or felt like it was passing food. I was ravenously starving all the time. But I did not digest food, which made it hard to deal with everything I consumed in my endless hunger. Instead, food matter just sort of hung out inside my bod... maybe it would seep out after a week or so? (Just wait for South Africa, if you think that's gross.)
Man oh man, did I lay around and do a lot of nothing but feel miserable during the summer of my 23rd year. There was nothing else I could do.
Every attempt to leave the house left me overwhelmed, exhausted, and panicked to get back to the comfort of where I could lay undisturbed and eat. I felt disoriented and drunk all the time. I couldn’t pay attention to school. I barely could make it to my job. I learned to fear driving.
My high-functioning go-go-go life was over, without warning. I looked terrible and I felt like I was dying. Soon, I almost was.
Almost dead in Africa
So, the thing about this time in my life is, it’s right after I had been on a huge upwards trajectory in life. I was finally going out and getting mine.
One of the things I had gotten myself was a study abroad tour in South Africa. Of course, that monumental trip (my first time out of the country) was rapidly approaching right about now.
Here I am, not understanding why my body has just… stopped working. Everything is falling apart, literally from the inside of my guts out. And my mental illness has just ramped up to level 11.
I’m losing it, rapidly. Not only were my depression and anxiety higher than EVER IN MY LIFE, but I even had a mental break, or I think that's what it was.
In short, there was even a day when I couldn’t read or identify words at work. Nothing made sense and I had to go sit in a dark corner to decide what was a dream or reality (all of it was reality). I cried and shook, and called my mom until anything made sense again.
So here I am, totally broke and having terrifying physical health shit happen left and right... and I’m utterly lost. I don't know what's suddenly happening with my body and I'm trying to get help.
Cue Western medicine to make everything worse. Most doctors were poo-pooing me for my "psychosomatic issues," including the free clinical health care at my school where they simply told me “you can’t keep coming in here” during my third debilitating sinus infection of the spring. Helpful.
Most doctors were telling me my basic blood levels look fine, so “Iunno." They would hand me some bullshit sleeping aid prescription with an allergy pill and send me along. Read more about that helpless infuriation here.
Then one day I’m talking to a new doctor who actually stops and considers my blinding migraines, mental break, and mysterious physical debilitation. He thinks I should have a brain scan... for the second time in my life, I'm told maybe I have a brain tumor.
I went for my MRI scan, and a few days later I was on a plane to South Africa. Yeah, I’m skipping some things, but working on being concise here.
You know what’s awful? Being somewhere extremely remote where you can’t call home and thinking about having a brain tumor. I processed a lot of deep questions that trip. I accepted that I wouldn’t treat the tumor, and decided how to spend my time (was going to write a deeply emotional album, but never got around to it).
You know what else is awful? Eating a lot of bread and wheaty snacks somewhere extremely remote when you haven’t figured out you have a wheat/gluten “thing” yet.
After that… I spent nearly a month with my body in full-blown FUCK YOU mode, and no one to consult about the terrifying things happening to me in my new, desolate environment on the other side of the world. There was no internet, no cell service, no way to even cry at my mom about my fears.
On top of all the fun symptoms I’ve already described… now just imagine that your body stops emitting wasting. Literally, the pipes just stopped. Not in a dried out, feel the marble but I can’t push it over the edge, constipation way, but in a “my organs do not function” way. Anything that did come dripping out was the equivalent of rotting sludge. Non-digested, spoiling food.
My biological processes were not working, and I was basically a walking septic pool.
Go out and see the world, they said. It’s a once in a lifetime opportunity, they said. You'll never forget it. Hahaha
This shit goes on for weeks, as I’m surrounded by confused and conceited sorority girls who probably shouldn’t be allowed out of their backyard. I had NO one to talk to, nowhere to go, no idea what was happening. I just know it might be a brain tumor, and I can't find out until I return home.
I spent a lot of time considering my mortality on that month long trip.
Cut to the plane ride back, which was hands down, the most pain and suffering I’ve ever been in. Not only was all this cool general illness/digestive failure stuff happening, but my body went ahead and threw an unending, untreatable, blinding migraine into the mix.
I was in horrible pain for the entire two days of travel. I remember it fondly.
With all that activity in my brain and body, I sat on two planes and multiple airport benches and hoped I would make it home.
When I got off the fucking sky prison and saw my mom, I cried. She quickly told me they didn’t find a brain tumor. Then I told my mom I might need to go to the hospital anyways, because my guts were about to explode.
I didn’t go to the hospital that day, but I did go to my mom’s house to recover and sob for about a week.
In true girl fashion, I also cut off most of my hair and dyed it blond? Been through something terrible? Time to make rash decisions including 18 inches of your hair. Trauma consistently has this effect on me.
Finding answers and recovering... slowly.
I spent a long while recovering after my grand trip abroad.
Things were not good. I returned to my isolated, personal hell in my college apartment and tried to live each day laying in bed. I was even more out of control physically than before.
Now my guts felt like a little sausage jammed into a tight wrapping. Every inch of my body hurt, like it was too much pressure built up inside, stretching my skin until it was sore.
As someone who was definitely "too skinny" before this whole cascade of health problems, I was mortified with the transformation my body went through. I appeared bloated and balloonish out of nowhere. I noticed one night that my entire face was so swollen I didn’t have a chin where a firm jawline once sat. I had a moon face in the light of the moon.
From the evening I first noticed my inflamed face, I started thinking… "maybe this could be an autoimmune thing?" My next thought was, my grandpa had celiacs disease.
And so the Googling began.
I’ll say that my results were hit or miss. Some sources say that there are strict symptoms for gluten intolerances and illnesses, some say that the symptoms vary widely from human to human. There was a whole spectrum of information. Despite the fact that this was on the cusp of the whole gluten-free trend, it was hard to find anything very reliable.
I figured, what’s the worst that could happen? I stop eating bread and can't feel WORSE than I do right now. So what the fuck.
I cut out all breads, wheats, and whatnots. And I felt better within a week. Not entirely better... not even close to 100%. But so much better.
Years of mystery
My full digestive and systemic recovery would take years after this discovery.
As far as I can tell, the resulting complications were called “Leaky Gut Syndrome” and it’s just as disgusting as it sounds. I would spend the next 4-5 years on a roller coaster; feeling better, eating something, feeling much much worse.
My triggers weren't even limited to gluten – there are many other foods that can irritate your leaky gut or appear to be glutenous to the body, triggering an immune response. Makes for fun times when you're already a broke, broken down college kid... just trying to make it through your final semester. of Biochemistry and Organic Chem
What I’m really saying is, even after figuring out my brand new digestive no-no, I still felt very out of control and out of touch with my body. I didn’t have the energy or strength I used to. Worst of all, I didn't have the CONFIDENCE in my body that I used to after it had betrayed me so thoroughly.
I became paranoid and defeated about my diet. I struggled with my eating a great deal, both over-eating and under-eating – sometimes due more to mental illness than anything else. I spent most of my time isolated and dealing with how fucking crappy I always felt. I stopped leaving the apartment. I was afraid to go out and trust the foods anywhere besides my own kitchen. I didn't know what was safe, because everything seemed to have a downstream effect.
When people tried to make lunch plans with me, I broke down crying with indecision and the sense of imminent doom. I was afraid to touch a morsel of restaurant food. I didn't want to plague anyone with my physical issues or dietary concerns anymore, so I withdrew.
I felt like a prisoner in my body and my brain, and soon, my apartment, as I dipped my toe into the agoraphobia that would later take over a few years down the line.
But it got better, eventually.
Many years of careful attention later, I don’t have to worry so much about my glutens. I generally don't have leaky gut or respond to strange glutenous substances (unless I get crazy stressed). Cross-contaminations aren't really a concern. I can even have gluten in small doses without losing my health.
If I keep my head on straight, my body usually follows.
It was a long, hopeless road, but I physically recovered.
My illness – “the glutens,” as I still know it – the shitty frosting on the trauma cake of my early life - really fucked me. The initial onset, the years of recovery, and the mental illness it stirred up consumed most of my twenties.
“Existing” through years of my life being miserably sick and weak was a secondary round of trauma and acceptance. It also dissolved any confidence I had in myself or my physical body - which were the only strengths I ever reliably had.
In response to feeling fucking terrible all the time, I disconnected from my body almost completely.
It re-enforced my fears that the world is unpredictable and you can be helpless in a moment. It isolated me, worsened my mental illness, and I lost (often proactively) many friends. I found new lows of being anxious and depressed in my ongoing loneliness and agoraphobic fear.
So there you have it, friend. My mental and physical downfall at 23, thanks to unattended trauma, perfectionism, and over-achieving stress.
In my more recent years, I've realized how kinetic and responsive my body is to bad energy and anxiety. By that, I mean, if my brain is having a hard time, my body is about to get REKT.
My inflammatory pathways are beautifully defined and my cortisol levels are ready to hit 2-3x the "maximum range" at any point.
It's no wonder I got sick after 23 years of ignored trauma. This bod is ready to fight for survival.
If you'd like to read further on my failed attempts to get help with my mysterious illness (thanks for nothing Mayo Clinic), check out this post!
Stay sane and stay healthy!
If you’re dealing with something similar, I’m so sorry. Your health is the most important thing.
Take care of you, and I promise it won’t be so hard all the time. I didn't believe it for years, either.
Send me a message if you wanna talk. firstname.lastname@example.org