This is a very personal story. I’m still not sure why I feel compelled to share it; most of the reasons I can come up with are unconvincing, and I feel like disclosing these things puts me at significant personal risk. At the very least, I hope that people can reach the end of this story and see someone who has been strong and resourceful, rather than someone who is too fragile to rely on.
In May of 2015, I returned home from a Sunday hike and was preparing for the week ahead. It was like any other Sunday.
I was hugging my partner-at-the-time when I felt an icepick headache. This in itself was not a problem; I’d been having them fairly regularly, and I’d never worried about them before.
However, this particular incident was different. My heart rate was runaway, and I blacked out for a second. I felt too shaky to stand afterwards.
I didn’t feel like I was dying, but I thought it would be wise to get a professional opinion on that. At the emergency room, I felt mostly numb, although my skin was tingling. It was hard to see clearly. The ER doctor confirmed I hadn’t had a heart attack, and suggested I’d feel fine in the morning.
I did not feel fine in the morning.
In the weeks that followed, I remember experiencing:
- Brain zaps that were powerful enough to wake me from sleep.
- Head pressure, like someone was squeezing my head with a vise.
- Blurred vision.
- Strong physiological feelings that I was someplace I wasn’t supposed to be.
- Feelings of unreality, like my body was moving through something that wasn’t air.
My GP told me it could be anything, and so we began “ruling out underlying physical problems.” I remember winning an office Street Fighter IV tournament while wearing a Holter monitor. Another doctor suggested I might have a neurological issue, so I saw a neurologist. A third told me it might be a brain tumour, so I had a cranial MRI. The blurry vision and headaches led my GP to consider a certain condition that causes increased blood pressure behind the eyes; a few days after this suggestion, an optometrist praised me for my impeccable eyesight. Oh, and the blood behind my eyes looked completely normal.
I don’t remember how long it took to run out of tests, and it’s too painful to look back at the records. I think it must have only been a month or two. I do remember how shocked I was when my GP invited me for a follow-up appointment to tell me that “I don’t know, it must be anxiety or something.”
Despite everything I’d been through, anxiety or something was not a diagnosis I had even remotely expected. I didn’t feel anxious; I felt sick. And now I was worried about feeling sick. Wouldn’t anyone else who felt this way be worried?
I was referred to a psychiatrist in the clinic. I waited what seemed like an eternity for that appointment. I kept detailed notes of how I felt throughout the day, recording things I thought might possibly be triggering these supernatural feelings in my body.
On the day I was to meet with the psychiatrist, I remember the hope I felt that he might just be able to fix everything. I showed up with my notebook of all the things I’d experienced so far, and asked if I could take him through it. He told me not to bother, he already knew what the problem was. When I persisted a bit, he said “Well, if it will make you feel better, go ahead.”
After I told the story, I remember him berating me. “Now look what you’ve gone and done to yourself,” he said. “You’ve made a big deal of all this and now you’ve put yourself in this terrible state. You just have to calm down.”
Just now, I made three different attempts to describe how I felt at hearing these words, at the way they were said. I can’t do it.
I was prescribed psychotherapy. After a bit of a struggle to find a psychotherapist, I spent a few sessions learning Cognitive Behavioural Therapy. This was the stage where I stopped trying to “get back to normal”, and instead focused on finding a way to live my life.
Over time, I recovered. There were still ups and downs—weekends, especially, would frequently result in flare-ups—but after about a year, I more or less forgot I had any sort of health condition. Physical symptoms reduced significantly, and I was less concerned with them when they returned.
I remember giving several talks at meetups about “anxiety disorder” and recovering from it. Whenever I gave one of these talks, I felt like I was tempting fate a little. I felt much better, but I didn’t really understand why or how my recovery had happened. Naturally, I had the occasional worry that one day things would get worse.
However, the lessons I’d learned to get this far really improved my overall outlook on being alive. I was more patient, less perturbed by problems. For a few years, I was the happiest I’d ever been in my life.
Near the end of 2017, life became challenging. I went through some scary changes in my personal life, and I was simultaneously promoted into a role I felt unready for at work. Normal life stuff.
For much of 2018, I spent a lot of time hiding in confined places and crying. I was very lucky to have money, job security, extremely supportive coworkers, and a loving family while all this was happening. I was optimistic that I was going to get through it, but I remember frequently worrying about what all this stress was going to do to me. Physically, I actually felt healthier than ever before, but it felt like the kind of energy you’d expect to have when hanging from a cliff by your fingertips. And I let myself hang there for a very long time.
By April of 2019, I felt like I was finding my way. After a particularly difficult couple of days at work, I sat down to eat lunch, feeling mostly at peace with the world. I was looking for something to garnish my meal with, and found this terrific hot sauce in the office fridge called “Pain.” (You can’t make this stuff up.)
I have a very high tolerance for spicy food, and this hot sauce wasn’t even that bad. However, after eating it for the second time, my stomach did something it had never done before: it twisted.
For a couple of weeks, I was in fairly excruciating stomach pain. I shrugged it off; I’d done it to myself, after all, and I had a great story to tell people when they asked why I wasn’t eating. This was also around a time where many of my work peers were experiencing stomach issues as well. It was that kind of year.
After recovering, the pain came back again less than a week later. It was worse than before. I saw my GP, and they laughed at my story and said I had gastritis. It made sense; I started on a course of proton-pump inhibitors and hoped it would clear up soon.
In the weeks that followed, I experienced:
- Heightened feelings of anxiety beyond what I’d ever felt before
- Weight loss (I lost 40 lbs)
- Extreme fatigue
- Joint and muscle pain
- Nightmares and sleeplessness
- Feelings of mental “fog”
At first, these sensations seemed to be triggered by the antacid drugs. When I was on the drugs, I would get the feelings described above. When I was off them, the stomach pain returned. I was scared to be on them and scared to be off them. I moved through my life like a wisp of smoke; I felt like any stiff wind might blow me away completely.
I went through two gastrointestinal examinations that mostly just made things worse, because they required me to fast. I was already barely eating. An initial endoscopy showed that I had no signs of gastritis at all. The gastro then insisted on a colonoscopy because “the symptoms were similar to colon cancer.” I was extremely certain I did not have colon cancer, but was told they wouldn’t proceed with further recommendations on how to help unless I did it.
I did it. I did not have colon cancer. Their further recommendations were to “try not to stress out so much.”
I’m going to skip a few months of turmoil and say that, thankfully, I found a very helpful resource in Curable. It helped me develop an understanding of how my personality traits and the current stress I was experiencing could lead to psychophysiologic disorder, and gave me many tools and resources to explore on my own.
By September of 2019, I had kicked the stomach drugs and was pain-free. I ate whatever I wanted; I gained weight. My head cleared.
I was extremely proud of myself. Only a few months prior, I’d been convinced that I was doomed to a lifetime of stomach issues, and already I was coming out the other side.
The Long Tail
However, things were not destined to be so easy.
In the middle of October 2019, I began experiencing crushing tension in my head and upper body. I was used to a lighter version of this already; I’d experienced it since way back in 2015 when things first went a bit weird on me, and after that I tended to feel it on weekends. However, this time it was dialed up to 11.
I also developed a new feeling that was very hard to describe; even now, I don’t have the words for it. It’s a sensation that travels throughout my upper body, as if tracing lines along tracks of nerves. It’s like a cold fear being injected through those nerves. I hesitate to explain this to people too often because I feel a bit crazy, but I’ve come across myriad descriptions of it, so I know others have experienced it as well.
At least one of these sensations would be active pretty much 24/7. In the past, I’d been able to find relief in sleep, and often when eating meals; now, it would not let up.
I read that many people who recover from chronic pain often will experience a spell of chronic “anxiety” (read: very uncomfortable sensations that don’t actually hurt) as part of their post-recovery, so I tried to use what I’d already learned to get through it.
It didn’t help.
In November of 2019, I was starting to believe that I wasn’t going to make it. It was rare to get a minute or two of peace and comfort in those times. More than 99% of my life was just white-knuckling it, trying to survive from one moment to the next.
I very clearly remember the day when things started to turn around for me. I was at work, and I had a relatively difficult meeting coming up. It was the first time that I’d ever considered just walking out of the building and telling everyone that I didn’t have the energy to be employed any more.
Before sending that email, I told myself that I would try one more Curable exercise, and if I didn’t feel any better, I would have permission to leave.
When I opened the app, they had just updated it for the first time since I’d installed it months before. There was a whole new section on panic and anxiety, by the founder of DARE. I did one of the exercises, and I felt the fog clearing for the first time in weeks. I was stunned. I couldn’t believe how immediate and intense the sense of relief was. I got through that difficult meeting, and through the rest of the day.
That miraculous moment started me on a new direction of recovery. It’s one that I’m still on; however, now I have much more evidence that things are working. At first, I would have good hours here or there; then, a good day or two; and later, incredibly, I’d have some good weeks or even good months!
I’ve also had countless struggles in this last, long stretch. I mean ‘countless’; I’ve lost track of the number of downward spirals that my body has taken me on, that I’ve dug myself out of with the myriad tools I’ve learned, and the help and support of the most wonderful people I could hope to have in my life.
These days, I rarely get stuck in downtrends for very long. My worst days are pretty much as bad as they ever were, but I move through them very quickly and my recovery times are much shorter. I notice my body responding much more to the current situation, rather than being on high alert all the time. The future isn’t looking easy, but I have a lot of faith in it. I’m also deeply aware of how much worse this could have been for me. I had everything going for me, and even with all these advantages I almost didn’t make it.
I have learned more from these six years of health struggles than the sum of all other experiences in my life combined. I can’t say that I’m grateful that I’ve experienced this, but I do like the person I am now much, much better than the one I was before this happened.
There is just one lesson I want to share in this post. Both of the stories I told started with a sudden, surprise event; the first with a knockout panic attack, the second with a stomach issue caused by a hot sauce called “Pain”. However, when I look back at the times that preceded those “sudden” events, I had many signs that this was coming.
Prior to my first panic attack, I had been experiencing increasingly frequent icepick headaches and a persistent head tension that I shrugged off as inconsistent caffeine consumption. In the weeks before my first episode of stomach pain, I had been feeling all sorts of fleeting uncomfortable sensations in my body, and I was having more frequent panic attacks. Again, I shrugged them off; I’d had enough panic attacks already that they barely registered, and the other weirdness wasn’t something that I wanted to think too deeply about.
Both times, my nervous system was trying to warn me that I needed to stop and face the problems in my life. Both times, I generally tried to press on ahead as if nothing major needed to change. My tenacity has often brought me great rewards, and so I tend to over-rely on it. Thus, I refused to listen.
My body responded by making me feel so awful that I could not refuse to listen.
I think this is the thing I’m most likely to carry forward with me. I will inevitably face great stresses in my life again; however, I feel more attentive to the possible signs that I’m not facing my problems directly, and I believe I’ll be more active in making the necessary changes.
There are many other things I could write about here, but I feel like that’s enough for now. I hope this helps someone, somewhere, but at the very least it feels like a relief to have written it out, regardless of how what I’ve shared ends up being received.
(08-May-2021 update) Inspired by the responses I got to this post, I wrote a follow-up.