Trigger warning: this post discusses mental illness, self harm, suicidal ideation, detailed accounts of emotions, job loss, and high achieving mindset.
Living with Mental Illness
Some people worry about me. I know that they wouldn’t have made the same decisions I have made a long the way. They tell me that. For instance, returning to school for a second undergrad degree. Some people worry about my finances. Some people worry about my liver due to my medication. Some people worry that I’ll regret not having children when I’m older. I hear what they’re saying, and I’ve had to time to formulate a response to it.
My mental illness took my life away from me for several years. I was alive, but not living. Sometimes I wished I weren’t alive, or that I could just press pause for a long time. I needed a break from my big emotions, from my failing hopes and dreams, and from my messy history of friendships that I was embarrassed by. I could barely live out the simplest of my goals. And in 2016 things started getting a whole lot worse for me. I lost a third job to this disease and its symptoms. I could not cook a meal. I could not cross the street to get to the grocery store. I reached cognitive dysfunction, which is by far the scariest place I’ve ever been in my entire life, scarier than panic. I know that panic ends. Cognitive dysfunction is a fog that disoriented me and disconnected me from reality indefinitely. I understand that not many people return from this place with grace, and not many people reach stable recovery. I am so fortunate. And therefore, the things I am grateful for are likely different than what most people are grateful for.
Reclaiming my Energy – Becoming Selective
I don’t meet your typical vision of a woman with a complex mental illness. Sure, I have some traces of my struggle with mental health, including self-harm scars, but I have been high-functioning most of my life. Once I reached stable recovery, I was a clear “high-achiever”. I was both creative, and “intelligent”, but by far not a struggling creative genius as is sometimes sensationalized with this disorder. I wasn’t an angry or assertive person, I was actually really easy-going, though a big hyper-vigilant. My average in my second undergrad was 95. I crushed the hardest fitness classes at my gym. I was a top performer at all my jobs. I excelled in many areas of my life. People who met me in 2018 – 2020 wouldn’t have recognized me in 2013 or 2016. I was healing so profoundly that I learned new ways of being. I smashed my goals. But not without a work hard / rest hard mentality. Hustle porn, rise and grind, and win at all costs mentalities did not work for me. And this is where the spoon theory comes in to play.
The medication I take for my disorder, which makes me groggy and sluggish, lasts 12 hours. This means that I feel a bit suppressed for half of my day – that is why I take it a few hours before bed time. This medication has forced me to slow down. It forced me to rest. It forced me to restructure my time in a way that accounted for rest. It forced my brain to pause its neural connections. And then it began to strengthen the most useful connections. By slowing down and rewiring parts of my brain, I began to tune in to more subtle emotions. Over a period of 3 years I became an “intuitive rester,” as I called it.
“I capture and refine,
smooth into flat lines
between paradise and
I train the peaks and valleys to
with the geography
of my mind”
Kim Barton, 2020
[In a song I wrote called Water (2020), I described capitalizing on my hyper- and hypo- focus – something that was only possible because I had returned to school, had a flexible schedule, and was fortunate enough to live with my parents.]
During 2017, when I started taking this medication, a shift began. I began to recognize that “being is doing” and had to relearn what productivity meant. Eventually I stopped wearing my Fitbit to track sleep and steps and heart rate. I started acknowledging when I got tired. This idea of intuitive resting was extremely novel for me. As someone who was used to rushes of adrenaline or the numbingness of marijuana, I did not know what natural exhaustion felt like. I let go of the numbers game of performance (grades, exercise, etc.), because none of that mattered if I wasn’t well or if I slid into cognitive dysfunction again. I started to spend time in nature. I returned to working with children. I started to read for pleasure (reading and I have not gotten along since my early adolescence). I started to write music again. I started to recognize the warning signs of danger – without my big emotions in the way, and with my prefrontal cortex activated, I was able to feel the subtle alarms that were present prior to crises. I could predict a panic attack. I started to notice what invalidation felt like, prior to getting angry. I started noticing the birds chirping. I started to smell the pollution in the air. I could hear the sound of a dim light buzzing from across the room. And I leaned in to all of this sensitization.
In 2019 I started to consider my mental illness as a chronic health concern. But this realization was not linear. For example, I did not require accommodations at work or school and I was not disabled by my diagnosis anymore, so I felt apprehensive about taking up space in the Spoonie world as a high functioning and high performing person. I kept my diagnosis fairly quiet, until I started to realize how it impacted me on a daily basis: mostly the symptoms of insomnia, the rare panic attack, and the battle of hyper- and hypo-focus. I had to start carving out space for myself and standing up to people who asked for my time on a moment’s notice. I only had so much energy each day and it could get drained by almost anything, depending on the many factors of that day. Sometimes it was getting dressed that was the hard part. Often, it was getting somewhere on time that took a spoon or two. The reading and writing for school usually used several units of energy. Cooking required a day to itself because that was often all my spoons for a day. Exercise became something that was unpredictable in terms of spoon use. This framework resonated with me, especially because I was so out of sync with others around me, and I had to create boundaries about when my day was finished. I started telling my professors I had a chronic health condition. Having to rest for nearly 12 hours a day definitely felt like a chronic issue of some kind, and the fact that my sleep, nutrition, exercise, and stress all affected my functioning, made me decide that it was a health issue. Mental health is health after all.
Sometimes my day would be “done” by 12pm, and other times at 12am. I borrowed a lot of spoons during this time. At some point I started to call it “being protective of my energy”. This was difficult to explain to folks who do not have experience with a chronic illness. I was told that my rest time is a luxury. That others do not have time to end their day randomly at 5pm. They tell me that they could only dream of a world where they could decide to call in sick for a shift when they weren’t bed-ridden by the flu. This is what I mean by carving out space for myself. Few folks without experience with a chronic health issue seemed to understand my protectiveness of my energy. And because I did not feel comfortable sharing my diagnosis, I felt really invalidated by this lack of understanding. There is such little space for invisible illnesses in this world.
So I started to change my language. I said that I am “being selective with my energy”. I wanted to reclaim my Spoonie identity in a way that was empowering. I have the ability to choose how I am going to spend my energy, especially as a woman. Yes, my able-bodied, white privilege is showing, and I am working on that.
But when I say I am selective, I do mean this quite pervasively, including: the time of day that I exercise, whether or not I consume alcohol/caffeine, what TV content I consume, the people I engage with, when and where I will go on dates, which high-sugary and high-protein foods I will eat and when, and when I engage in rest and recovery. Resiliency is my biggest focus, and that requires being protective of my energy. I am finally okay with that.
I was fortunate to have been introduced to Miserandino’s compassionate Spoon Theory in 2015 by my previous roommate who has a connective tissue disorder. I was familiar with their daily battle with energy and their struggle with pain. This theory resonated with me at the time, but became even more relevant a few years after receiving my diagnosis – once I truly understood the complexities of both “high functioning” as well as high achieving. Once I was comfortable being selective with my energy, I realized that it wasn’t always enough. Sometimes out of nowhere an incident would still cut me off for the rest of my day. But I was energized. I was dysregulated. I was hyper-focused on the wrong thing. And that is when the Fork Theory started to make sense.
In the Fork Theory, external factors are recognized for their ability to build up and inhibit functioning. Everyone has a “fork limit“. That hit home for me, because if and when my big emotions were triggered, I would be done for the day. And maybe for a few days. You could still view this as spoon theory, in that it took all my energy, but it was a different feeling than being out of daily energy. It was a deeper sense of being stuck.
I sat with these two mindsets for a few days before I realized that something else was missing.
Carving Out Space – Knife Theory
As someone who has struggled with her identity, and as someone who has claimed several intersecting identities, I spend unnecessary time and energy on carving out space for myself. As an ally, and as someone who had to learn assertiveness skills, I began to feel the burden of naming my needs, setting and maintaining boundaries, and confronting racist/misogynistic/heteronormative views. Further, as someone who is both high-functioning mentally ill and high-achieving, continuing to carve out space for my way of being was difficult. Academia is an able-bodied, colonial, capitalist system, that I am resisting in my daily life. Online dating was a whole other story, and one that I have opted out of for the foreseeable future. But I began to realize the ways in which my energy was depleted, my experience invalidated, and my identities reduced to being an “SJW”. I was getting dysregulated by trying to recognize and manage ways to carve out space for myself.
I know I get it, I am stretching this utensil analogy a big far… but bear with me for a moment longer.
It is important to recognize that there are several spaces I am well supported, and do not need to carve out space. But in my everyday life, my family, friendships, past relationships, work, and hobbies, there is little space for the multifaceted, intersecting, complicated, paradoxical, and hypocritical aspects of myself.
So I started to decide that I only had 1 knife for every few days to carve out space. I only could handle 1 tough conversation every few days around why I could not attend a social event, or calling out misogyny, or requesting an extension on my school work. Otherwise, it was both the fork situation and the out-of-spoon situation magnified.
This theory, I think, might be helpful for folks of many intersecting identities, because these ways of being, knowing, and doing, often challenge aspects of western culture and are given no space in everyday conversations, as well as no space in high-profile discussions, events, and movements. A good example is the generally all-white climate action movement in Canada. Representation matters, and when we are discussing what is best for the land, we also must discuss what is best for the people; i.e., Indigenous communities and relationship with the land. Larissa Crawford discusses asking the hard questions, but she does so with intentionality. Asking hard questions does not mean arguing with every injustice you come in contact with. We are not savage vigilantes. Instead, we are wise warriors who choose our battles.
This theory is therefore potentially helpful for folks who spend time engaging in social media discourse. Reading comments and memes can be both energizing and infuriating. Fuelled by sensationalism and catchy headlines, we can easily be absorbed into spaces where there is no acknowledgement for our ways of knowing, being, and doing. I urge you to think critically about where and when you are going to carve out space, by also thinking critically about the spaces you visit.
This theory is relevant for me in one other final way. This disorder can distort my perception of the number of spoons that I have, and can stick forks in me that I don’t feel. The knife theory reminds me of my limits even when I cannot feel them. Living with these symptoms means that I am grateful for my daily routine, and I am focused on living a fulfilled life. As a Millennial who is bisexual, self-partnered, childless, feminist, mostly sober, and in academia/childcare, and whose hobbies include song-writing, skiing, running, blogging, photography, and yoga, AND who is a daughter, cat-mom, sister, friend, colleague, masters student, ECE-in-training, and employee – I have enough identities to manage, and I am not worried about my finances, my liver, or my future without children; but thank you for your concern.