There's a common line I encounter in therapy:
"comparison is the killer of joy."
Five years ago, if I was handed such a line, I know I would have nodded thoughtfully and deleted Instagram from my phone for a couple of hours. How profound a lesson. How quick a fix.
Even then, I recognized, however superficially, that my life didn't hold up to the grandeur of other people's social media feeds. But, even then, I posted. Even then, I smiled and fine-tuned my features. I kept a watchful eye over like counts.
My high school Instagram is long gone now - replaced halfheartedly with a Bookstagram, where I don't feel obligated to perform or show my face.
With that change and the addition of two shitty diagnoses, I don't look at my face the same way anymore. I am so deeply mistrustful of this vessel, of my existence, of my silent, uphill battle.
The brightness of youth I marvel at in childhood photos has burrowed inward and become unforgiving, indignant inquiry.
Inquiry into how I can make do with living life in this body. Better yet, how to love this body, even when it keeps me so immobile and so lonely.
I've described chronic illness many different ways in my writing, but what I've settled on lately is that it is, in short, bracing for impact. All the time. Every minute of every day.
Tense shoulders are the least of my worries. The weight of expectation, a lifetime of preparing to be held back and held down by your own body's dysfunction, is absolutely maddening.
During a flare-up, this "weight" is almost immediate from the second I open my eyes. I went a long time unable to describe it - which was part of the pain and the panic. It's exponentially more isolating to go through something invisible, something untranslatable to others.
Anyone who grapples with POTS knows the torture of simply raising your head from the bed during a nasty episode. I quickly had to learn that in order to stumble to the kitchen, pre-syncope, I had to, in a sense, hold my own hand. I had to find a reason to get out of bed every single day.
That, to me, remains the hardest part of chronic illness. The task of communing with yourself at your lowest in a way that is both accommodating and kind but still stern enough to keep you from rotting in bed. It's a paradoxical task - acknowledging inherent physical precarity and still believing in yourself all the same.
It is the intricacies of this particular challenge I wish to explore today, in hope that someone else in the cycle and isolation of chronic disease, someone bracing for impact, may share a breath, a moment of respite, with me.
So, where to begin...
I suppose for the sake of keeping my thought stream as organized as possible, I'll make this a series of points. A trio of core takeaways pertaining to the post-diagnosis chronic illness journey.
A Way Through
Before I really got a grasp on what I was dealing with, before my diagnoses took shape, a big part of my chronic illness journey was dealing with fear and anxiety.
At first, it's fear of the unknown, yes, but then it becomes a more claustrophobic type of fear. For anyone who has ever experienced the joyous occasion of a full-blown panic attack, think that kind of fear. The kind that tells you what you're facing is inescapable. That you're trapped.
I became paralyzed by this kind of fear during flare-ups. So much so that I ended up exacerbating my ailments rather than turning to focus on restoration and healing.
During my most recent bout of bedridden days, I started to linger on a new phrase to try and keep that stubborn fear at bay: it's not about a way out; it's about a way through.
Getting through always feels impossible in the moment. Which is understandable. Chronic illness fucking blows. Life, in general, tends to aggressively suck. Finding the way through during major suckiness of circumstance needs to be tackled incrementally. Moment to moment.
It's droll. It's tedious. And you may cry each step of the way (I certainly do), but that's the way through. It's all about learning to control your brain when your body is already going haywire.
It took me a long while to pay the proper attention to the mental component of chronic illness. I wish I'd come to acknowledge it sooner. I always wanted to scoff when therapists told me that I am not my illness. (It certainly felt like I was. It had consumed my whole life and everything about me).
Pivoting your journey to make a safe space inside your own mind is, for lack of a better term, the final boss, in this horrendously difficult game of chronic illness. It seems unbeatable. It takes just short of a million tries. It takes endless practice.
Count on Change
I have a funny relationship with change. On one hand, I thoroughly detest it. I'm a creature of habit, and I don't like being thrown into the unfamiliar. On the other hand, the promise of change is the panacea to navigating life with chronic illness.
Though I tend to forget it at my lowest moments, my body is in a constant state of flux. This is not the same body I had at 15, and it won't be the same body I have at 30, 40, or 50.
The constant cycles and fluctuations of health and well-being are part of life. Things change not only long term but on the daily. Many times I have woken up on what felt like my death bed only to feel largely cured by dinner.
It's more so the unpredictability of change - the fact that it is something we must surrender to - that makes it feel so troublesome. We have to count on change whether we like it or not. We have to lean into it.
There's a passage from Haruki Murakami's The Wind-Up Bird Chronicle that I've personally attached to this particular realization. It reads:
"It's not a question of better or worse. The point is, not to resist the flow. You go up when you're supposed to go up and down when you're supposed to go down.
When you're supposed to go up, find the highest tower and climb to the top. When you're supposed to go down, find the deepest well and go down to the bottom. When there's no flow, stay still. If you resist the flow, everything dries up. If everything dries up, the world is darkness"
Letting go of the reins, and learning to hypothetically lean into each moment - the good and the bad, the tower or the well - has been one hell of a task. It's much easier said than done. I've only just begun to accept that with chronic illness, learning to stay still and treat yourself with care is imperative not just to survival but to finding restoration in what can be a very lonely, silent struggle.
To Choose Self-Belief
This final point is very much "in progress" in my own life, so I speak from a state of borderline cynicism, hoping to convince myself in the process of writing this.
I'm cynical because I've been conditioned to feel defeated. If you have a chronic diagnosis, I'm sure you're familiar with being sat down by at least one doctor and given the most dreadfully impassive, heartless speech that, without formalities, translates to something like this: you're going to be sick for the rest of your life. We don't really know what causes this. You're going to have to just cope.
Now, coming home from a doctor's office time and time again with this bullshit speech burned into my brain has done some damage, to say the least.
Turns out, a white coat is very convincing. Their words feel pretty damn decisive. I mean, we entrust these people to give out death sentences. When they give out the "life of suffering" sentences, who am I to say otherwise? So, I accepted their words. I took the hit. I swallowed defeat. I gave up most of my grandiose teenage dreams and braced for a bumpy ride.
This works at first (kind of), but the mental defeat of chronic illness will eat away at you. It does not sustain you. It leaves you stranded every time your symptoms land you in bed. In other words, you lose the ability to comfort oneself. Dare I say, heal oneself.
Coming out of my most recent flare-up in December, I've begun to implement a paradigm shift in my approach to carrying my diagnoses - an approach that can help to avoid their crushing me.
The approach is deceptively simple. It's the approach of rekindling belief in myself. To retrain the way my mind perceives my reality, my symptoms, my existence.
The idea that you can choose self-belief, and, subsequently, choose to heal yourself, fills me with immeasurable hope while also making me want to roll my eyes. The latter because I still don't believe in quick fixes, so the notion of transcending my situation through sheer will still leaves me dubious.
However, I do believe in learning and growing to know myself so intricately that I can establish a sense of peace and stability. I believe in a series of choices, a process, a cycle of ups and downs. As already explored, I now know to count on change, if nothing else.
Therefore, this year, I am, at the bare minimum, learning to choose each moment. To find a reason to get out of bed that is wholly within myself. To choose this body and this mind, and try to bring them into a more harmonious relationship.
This involves (surprise, surprise) a lot of meditation, but it also involves slowly trying to break my cycles of internal self-destruction...the negative way I've long thought about myself. In other words, I'm attempting to give myself more grace to actually learn and grow, establish new patterns, and trust this body more and more.
To establish this trust (a monumental task) after three years of decline, to choose to live this life is perhaps the most challenging thing I will ever do. It also very well might be the thing that saves me. Heals me.
If you're also on this journey and facing a similar task, I wish you lots of willpower and inner peace. I wish you many weightless moments and cycles of joy. If I can begin to make peace with this body, I know you can too.