How I Realized There Is No Shame in Being Ill
I knew something was seriously wrong the day I could no longer hold up a book on my bus commute. I had routinely been getting sick for years prior, first a few times a year, then doubling over the next few. By the time I started enduring bookless bus rides I was falling ill with what I thought was the flu near monthly.
I became weak and movement started to hurt my muscles. My brain felt like it was filled with cotton. My body became tender to the touch, hurting wherever it held weight. I was so confused when my booty started hurting all the time (from sitting)… I laughed that one off, but at night – when my memory foam felt like concrete and the usual electric pain skyrocketed – it wasn’t something I could stretch into amusing. By the time I started to get answers, I was so sick I was lucky to spend more than a handful of hours vertical a week, an array of other symptoms constantly plaguing me.
I kept it a secret as much as I could for as long as I could. I suppose I thought it was my fault, somehow. At first, I thought that I just had a lowered immune system due to my then great love of beer… even though it didn’t really make sense. Shame makes people do and think stupid shit, it really does.
I had been heading right to bed after work (when I could make it) nearly everyday for about two years before I became homebound. By then I had broken my daily after work beer habit, despite its pain-smashing effects, but continued to fall ill, and with greater frequency. Still, I kept it to myself, faking it as best as I could. It was so gradual. It was also totally invisible back then and I’m naturally a smiler, I pulled off “healthy” most of the time, I think. Faking it also distracted me from the cacophony of symptoms, making it easier to cope.
My friends probably thought I became aloof and flaky. I had taken to never saying anyone’s name so I wouldn’t mix it up or plain forget. I stopped making plans after blaming introversion for bailing at the last minute too many times. I’d reach out on the rare good day and sometimes get lucky, or make a plan at my house (no commute) with alcohol involved, so I could function despite the pain, but I was mostly alone long before I was trapped inside my apartment with no way out.
I started temping around the time I lost my treasured social life. At first it was because I just needed work in my new city of Portland, Oregon; but then I realized that I couldn’t get fired for missing too much work if I switched jobs frequently, as one does in temping. The temping probably didn’t help the shame, being at the bottom of the totem pole for the first time in my adult life. (And at age 30 to salt the wound.)
My first job out of college was a good one, boosted by a big promotion just six months after. And then the recession hit. The office I was a manager at shut down over several weeks, groups leaving the office in tears every few days or so, with us managers leaving last. In addition to trouble from missing too much work, I’d lose two more jobs due to mass layoffs or closures in the next five years – something that created stress, which I’d later learn contributed to the severity of my condition.
The day I realized that I really needed to use my walker on a regular basis, I screamed at a medical ride transport driver to, “Fucking stop the car right now!!” It was an act that startled us both. He had refused to stop at the grocery store by my house, something that had been planned with the company he worked for. I’d even double-checked because I had a bad feeling about it. I had absolutely no budget for a cab and no way to get to the store from my apartment at the bottom of a half-mile hill.
I got out of the car at the top and slammed the door behind me, quickly realizing that my knees were buckling again. By the end of the two minute walk to the store, I was crying from the pain and walking like I was 15 months pregnant with triplets, grabbing onto anything I could to hold me up. But I still didn’t use my walker routinely. Shame.
The day I actually started using it also featured a medical ride driver fight. He had shown up an hour late and then lied to me about it. My symptoms had shot through the roof in that hour waiting outside the doctor’s office, and my legs weren’t holding my weight at all. He at least got me to my pharmacy/grocery stop, and even offered to help – but I was too mad to accept his offer.
So, brilliantly, I tried to fling myself from the car to a nearby grocery cart, or makeshift walker. I pushed against the door with all my might but caught my thumb in the handle, unexpectedly on the side of the door, smashing it real good and immediately changing the skin and nail to purple-black. I fell to the ground, unable to get up on my own. It was a bad day.
I had a book in my hand and new information about a shared genetic mutation in my head the day I realized that I was suffering from the same thing that led to my mother’s death. I couldn’t get the 19-year-old memories of her screaming, “My nerves are shot!” out of my head. How she complained that she couldn’t think straight, even buying tapes to help her failing memory. How she always needed to lay down, saying she was just resting her eyes, but getting tearful when she couldn’t sleep over our noise. How she internalized it all, always feeling guilty for having such a hard time. I believe shame killed her.
I first realized that we shared mental illnesses when I was 19, after a year of intense depression concluded with a mental break. I optimistically attributed the latter to having done shrooms right before, but the fierce storm in my head scared me with its darkness and frequency. The mental break – or spiritual awakening if you asked my philosophy professor – was like a dream, a really good one. But, from the outside, I just went around my small hometown acting like I was a bit odd for five days.
Though I was deeply embarrassed about the event, the storms of depression didn’t come back until about eight years later, a year of job-hunting after that first layoff. The episodes increased over time, keeping pace with my ailing body. Of course, this was also something that I kept to myself, so much shame. I used meditation and mindfulness to keep the depression at bay, but it knows how to sneak-attack me – usually triggered by outside events, though sometimes tiny and not always.
The day I really did something about it was the same day I did something about the shame. It was spring of 2017 when I called 911 for fear of my life. I had gotten seriously horrible news and couldn’t stop thinking about the ways I could leave this life. My apartment suddenly seemed all scissors and pills and high balcony drops. After a terrifying night alone in the ER I was moved to the mental ward, and for the first time, I didn’t keep the depressive episode to myself.
I finally took advice from my writing (we seem to always teach the things we need to learn, eh?) and stopped caring about how others might judge me. This was too important. Too common. Too hidden. Mental health illnesses had already taken my mother, I couldn’t let it fester inside me anymore. I also hoped sharing my story might help someone else feel empowered to get help. I spilled my guts on social media that day, finally sharing about the mental struggle that had tortured me for so long. People were kind and supportive, several reaching out to me with empathy derived from their own challenges. Shame is silly.
The first day I finally shared my physical torture was the day I received my first accurate diagnosis: B12 deficiency, likely starting from birth. (A. Fucking. Vitamin.) I received the second just last month, after all other possibilities had been ruled out: fibromyalgia. A disease without a cure, whose cause isn’t known. However, there’s lots of anecdotal evidence for lifestyle cures; I’ve been eating a clean diet for a couple years, but I’m going to do even further diet changes. Luckily I haven’t been eating my feelings as much since shaking off the shame monkey – a fabulous diet trick that should make this cleanse easier than the last.
I’m frustrated by the potential healing possibilities that I just can’t do right now, like exercising my way through the pain as many people say they’ve done. That’s likely to send me into a flu-like flare that can last for weeks, where all I can do I lay down. They’re positively maddening. I’d give it a shot anyway, but how would I get anything done? My finances are already beyond a wreck and I need to get to the doctor, to get groceries… how do people do it?
I’m not without hope though. In fact, I’m convinced that I’m going to get better. I imagine myself running into the ocean at full speed and diving in, or doing gymnastics again, or hiking up an ancient pyramid; it feels so real. Positive thought isn’t nothing! As for the B12 deficiency damage, I’m taking low-dose Naltrexone, which is said to instigate healing – so let’s hope, send juju. I also now have emergency pills for the depression and have finally found a great therapist. I’m going to be OK.
However, I wonder what would have happened if I was assertive about needing help six years ago. (I’d still be able to walk reliably, that’s for sure.) I hope today is the day that you do something about a symptom of yours, be it physical or mental. Please don’t reason these things away or sweep them under the proverbial rug. It’s so easy to overlook the importance of health when it’s mostly good, but these things can take over your world before you know it. There’s no shame in illness, and there’s no shame in getting help.
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