For three years, I’ve been struggling with unending exhaustion. It sapped my strength, my motivation, my existence in the physical world. It left me immobilized on the couch, sometimes sleeping, sometimes merely laying there feeling miserable. It came and went sometimes, but mostly it came and stayed. And stayed. And stayed.
I talked to doctors about it: Maybe it’s a parasite. Maybe it’s an autoimmune disorder. Maybe it’s iron deficiency. Maybe chemotherapy damaged my system so badly I’m just never going to be without these symptoms. Maybe it’s chronic fatigue syndrome. Nobody knew what it was, and they knew even less what to do about it.
But I seem to have finally figured it out.
When I was diagnosed with cancer, I knew I needed pharmaceutical support for my mental state. (Plus therapy, which I’ve been doing now for years as well.) Being so shocked and traumatized by the diagnosis, I wasn’t in a place to recognize how well I was responding to medication, so I went on and stayed on the first pill my doctor recommended. Stressful things happened and I went up in dose, only to have side effects I didn’t like. Primarily, I felt emotionally flat — unable to cry, unable to laugh. So I went back to a smaller dose and stayed there for a while.
The antidepressant turning point
This past fall, I decided I wanted to go off my antidepressant. I didn’t consciously think through all the possible consequences. Although I greatly advocate all types of support for mental health, part of me hates being on medication. It’s a weird chicken and egg thing, though — if I’m off medication, then “obviously” I’m healthy, so I should go off medication to “prove” I don’t need it and am healthy.
This is not how we become healthy. Do not do this. If this is you, recognize and challenge this thinking.
I’m glad I did it, though, for two reasons. The first was to discover this faulty line of reasoning. It was buried in my subconscious, and going off my medication brought it into the light of day. The second reason was that I needed to experience life off an antidepressant to finally face the fact that I’ve been hiding from since I was a teenager: I am depressed. It is a physical condition. I cannot think or meditate or pray my way out of it. Medication is not the only treatment I’m using, but it is an important one I need to stop ignoring.
When we experience traumatic events, as children or as adults, our brains absolutely change. The hippocampus shrinks. We create physical shortcuts that allow defensive behaviors to be our first reaction to every situation, whether it’s needed or not. The prefrontal cortex may not develop fully, leading to dissociation and/or lack of focus. These are physical changes we can see in brain scans or autopsies, and we haven’t even begun to scratch the surface of the neural networks in our hearts and guts.
For so long, I thought of depression or anxiety as an imbalance of neurotransmitters, likely because that’s the dominant cultural narrative. In my mind picture, some little triangles (because of course, why not triangles) were floating around in my body soup, and maybe I didn’t have enough of them, but if I… tried hard enough?… maybe I could make do.
And this is what we are taught: do not need help because that means you’ve failed at something. Do not require mental health care because that means you were unable to fix it on your own.
Yet if someone has a physical disability we can see, we don’t expect that person to be able to do all the things an able-bodied person would. If you don’t have an arm, you can’t do things that people with two arms can.
I needed to understand that about my depression. It’s not just some slightly lacking triangle soup — my brain is damaged. It is not healthy. It is physically injured. Physical injury does not make me weak. It does not make me lesser. It just is. It is more complicated than losing an arm because we cannot see the mind. And yet its effects are no less real.
Moving past the limited thinking
I’ve always struggled with depression, even in the intervening years off medication between college (when I took antidepressants on and off for about four years) and my diagnosis. Instead of accepting and working with it, I ignored it. And there is a link between mental health and cancer: if I had fully embraced that I had depression and done something about it, maybe I wouldn’t have gotten cancer. There are a lot of factors that go into your cells going rogue, but that is definitely one of them.
(If you want straightforward medical facts linking serious diseases with stress and trauma, which are being proven again and again in the growing field of psychoneuroimmunology, I highly recommend When the Body Says No by Gabor Maté. Many doctors do not believe that stress can cause ALS or cancer or fibromyalgia, yet these same doctors are forced to admit that stress causes heart disease. Why would there be a big, red “do not cross” line between the effects of stress on the heart and on the rest of the body? It doesn’t make scientific sense.)
In January, my therapist helped me see that I was a wreck. I was crying, withdrawn, unable to find pleasure in things I used to enjoy. From realizing that, I went back to my family doctor and we picked out something new. Within this process, I went back to the diary I kept in college and found even more fodder to be brought into the light: I tried at least half a dozen pills in college (with the help of doctors and therapists at that time), and none of them worked for me. I read through my anger and frustration at being misunderstood, at the side effects, about the fear of people around me toward the drugs. I was 18, 19, 20. A child.
Wow. No wonder I was resistant to trying to do it all over again. I had a bad experience — no, many bad experiences — and no support. I remembered some of it, but so many of the details were buried. Reading the grief and fear freshly made me realize just how much we can be affected by things we don’t remember. Of course I “knew” I had struggled, but it didn’t change the way I was relating to myself, at least until now. The subconscious doesn’t forget, even if the conscious has.
Rejecting the dominant cultural narrative
I am now on a drug called Pristiq. The interesting thing to me, now that I’m able to see clearer, is that not all antidepressants work for everyone. In fact, this particular one does not work for more people than it works for.
But here is where I challenge the dominant cultural narrative.
In all our books, movies, and TV shows, we talk about the one silver bullet that saves the world from the menace. “I want to grow up and cure cancer,” I said when I was a child, although of course I had no idea what that entailed. But now, as I’m finding out, cancer is not cured even with one medication. I’m on three, and I had six months of a fourth one to increase my odds. And even now, I know my odds are not 100%, even though I still would like you to never tell me the odds.
It is a child’s fantasy to believe that one magic solution exists for a complex problem brought about by many factors, and unfortunately, it seems to be the operating belief most people, including scientists, hold. It is not something that we think about or consciously acknowledge, but it is there in the stories we tell each other and in the way we treat our sick and elderly. Even worse is how we secretly blame our sick and elderly for their conditions — but if we can’t admit we all believe in a magic solution, we cannot ever admit that we would blame our victims.
Pristiq causes a lot of side effects in the first two to four weeks. A couple days after I went on it, I felt drugged out. A zombie. I caught myself staring at the wall for who knows how long, and I made sure to have a ride to my treatment so that I wouldn’t have to drive. I also had terrible nausea that Gravol didn’t even begin to touch.
But then something wonderful happened. The zombie-ness lifted, the brown feeling of tiredness in my chest was gone, and suddenly, the world around me felt new.
It seems so cliche, but I tell you it’s true. Colors seemed brighter, sounds seemed melodious, and my sheer existence, instead of being something I questioned, was a joy. After my entire conscious life of feeling something I cannot express in words — but that can be expressed in one word, depression — I was free.
Because drugs are not actual miracles, for a couple days, I rode around in some kind of high. I was happy to exist. Excited at the books I was reading. Enamored of the wind in the trees and the existence of the universe around me. And while that has also faded, I haven’t actually lost all of my wonder.
Stepping out of the shackles of depression has allowed the childlike wonder that Jesus admonished us to have to come forward. It is not spiritually advanced to believe that some force or pill or person can magically solve all our problems — that is the belief of a young child in a parent who can save her, the result of our biology, which must be cast aside to emotionally become an adult. Instead, we become like children when we marvel at the natural forces that keep the atom spinning, the earth rotating, the energy from the sun that feeds literally all life.
We need to grow up and face the reality of the universe
So maybe Pristiq only works for 30% of the people who use it, but for the people whose lives it changes, it is everything. Hear me: we do not need medications that work on 100% of the people who take it. Insisting on it causes extreme harm and no good. As above, so below: we need diversity in every level of human experience. If it takes 100 types of medication to cure most depression, that’s OK. If it takes ten different interventions to mitigate my depression to a level that I can tolerate, that’s tiresome, but that’s still OK. We must understand that we are all different, and that in all ways, in every way, it’s OK.
The exhaustion I talked about at the beginning of this post is gone, and I cannot express how emotional that makes me. It seems so simple to regard it from this side, yet I know I have suffered and suffered and suffered because of it. Not only just after my diagnosis, but in the intervening years, when I worked at jobs I hated and forced myself to go on anyway because “that’s just what you do.” Maybe if I had been able to shake the “brown feeling” — which is the best way I can describe it, like a brown muck in the center of my chest — I would have made different decisions that made me happier and didn’t cause the right bodily conditions to allow cancer to grow inside me.
And yet it is not simple. On the days when I would lay on the couch in pain because of the brown muck, I wasn’t sad. I wasn’t crying. I wasn’t doing all the things you associate with depression. Yes, those would come and go, but the brownness was its own thing. It was separate. It wasn’t “the brownness is coming, so now I am depressed.” The two were not connected.
The point I’m trying to make is that I hypothesized that it could be a parasite because I didn’t realize depression could manifest as a solely physical symptom. I thought that if I was depressed, I would be crying, and that is why I couldn’t get out of bed. Not, I’m just fucking tired and my body is saying, “Don’t get up from this location.” This is why I thought, “Chronic fatigue syndrome.” This is why I thought, “Maybe I was bit by a tick as a kid and contracted Lyme without knowing it.”
Depression can manifest as solely physical symptoms.
I want everyone to walk away understanding this information.
It is crucial to understanding our experience as human beings, on levels I cannot even begin to touch in a short blog entry.
Sharing this is difficult for me
I have a hard time with writing blog posts because I want to give you a happy ending. This is what I’ve been trained to do as a fiction author (and a woman and a member of Western society, but that’s a whole other discussion). I mean, it’s not a prerequisite for publication, but tragedy is emotionally draining to read or write. So when I’m writing blog posts, I want to bring a happy ending, or at least meaning, to what I’m writing.
The problem with that view is that I’m not done with my story. My life continues. I wake up every day with cancer living in my body, and once a month, I go to the hospital to have it treated. I have scans, I take my medicine, I deal with side effects, and I continue to try to give myself a purpose in a life that includes not working because of this disability but still taking care of a 6-year-old and twin 3-year-olds.
Part of why I don’t write more often is because the sucking chest wound of depression has kept me down until recently. But part of why I don’t write more often is because a small piece of me is ashamed that I can’t bring you resolution. I’m not a miracle case, if you think that must include a diagnosis of No Evidence of Disease. I have imposter syndrome. Am I really a cancer survivor of the crisis isn’t over? If it goes on for years? If I have tried and tried and tried but failed to pass my medical exams?
Of course the answer is yes. I am a survivor. There are people who want to read my words. Still, knowing this doesn’t fix it.
We have a long way to go as a culture. I grew up an Elder Millennial, which meant I was taught we were post-racism, post-sexism, post-bigotry. I don’t think the younger Millennials harbor this illusion, and I know for sure that Gen Z doesn’t. It’s been a long, hard process, but I’ve come to the realization that we have some serious mental problems with the ideas and beliefs we hold. And if I can question myself so hard over whether I contribute to systemic racism or not, why can’t I interrogate how we treat all of our non-dominant demographics?
We do not understand mental health. Some segments of the population are working hard at doing so, but the first step is admitting what we don’t know. And what we don’t know is greater than what we do know — I think we need to all start reminding ourselves of this.
I’m feeling more alive than I have perhaps in my entire life. So now I have energy for many things, I have to relearn my relationship to the world. Does that mean blog posts? New stories? Time spent with my children and more?
Yes, yes, yes to all of it. I guess we’ll see what tomorrow brings.