Chronic illness and unresolved grief
~ more of what they don't tell you and why I stopped reading food blogs
CW: grief, chronic illness
Beloveds,
Yesterday I took a “hidden stressors quiz” that’s supposed to help me figure out what’s obstructing the path to healing.
and
Perhaps surprising no one, grief came out as a major thing.
What they don’t tell you is how much grief there is around every single aspect of being chronically ill and how it tangles with righteous rage until it’s all a churning mess.
There’s the obvious, sure.
Mourning the loss of the life you used to have.
Mourning the dreams that appear further away than ever.
Mourning “missing out” on life.
Mourning the ghosting of friends and family due to Reasons.
Then there’s everything else they didn’t tell you.
When I moved away from Boston to Taipei, I lost almost all of my friends, including my best friend of eleven years plus the man I thought I would someday marry and have children with.
That hurt, incredibly and devastatingly, but the true wound I still haven’t recovered from, the one that so many people dig into on a daily basis is the fear that I’m no longer “worthy” of love or friendship.
Or the fear that my chronic illness would chip away at people’s love for me until nothing would be left.
My father worrying over how I’d be a burden “to other people” if I didn’t get to a point where I could adult normally.
My mother shouting over how “it’s been more than a year” and how surely there must be improvement by now. Her complaints that I’m wrecking her health because she’s so stressed over mine.
My brother gently questioning whether I’m not self-sabotaging through lack of positive thinking and exercise.
The indescribable grief of sinking into the quicksand of believing that there isn’t a place for me in this world. Not as I am. Not as someone who isn’t “productive” in the ways that matter.
The doctors don’t tell you how every single new attempt is another layer of grief.
They don’t tell you how it feels to drag yourself to another new doctor, another experimental something, another blood test, another non-diagnosis.
They don’t tell you how difficult it is to justify not wanting to do the hospital-go-round to everyone. Because surely if you were serious about wanting to get better, you’d keep pushing yourself towards an answer, right?
It’s a never healing injury, and there’s no way to get to acceptance because it keeps getting dug open anew.
They don’t tell you how so much of this is mourning the loss of your innocence.
They don’t tell you what it’s like to fight a losing battle against cynicism and bitterness.
Inaccessibility. Of public spaces. Of friends and family. Of food. Of things required to stave off a flare.
They don’t tell you what it’s like to lose your trust in people and to have people lose their trust in you.
They never talk about the gaslighting. From doctors. From friends and family. From yourself.
I used to be an avid food blog reader, puttering around on foodblogsearch.com for hours and hours, cobbling together a recipe from four or five others.
There were a couple of blogs that I followed religiously because I loved their voice, the way they mixed story with food.
And then one day, I stopped. Cold turkey.
Being denser than a rock, I didn’t realize why.
I didn’t draw a line between realizing the decline of my health and fielding the ever-niggling questions of whether this man I loved was truly the person I trusted to spend the rest of my life with and the terrible grief of feeling left behind because all of the food bloggers I loved were getting married and having babies.
I might have said something dismissive about how they weren’t posting much except about their babies and that wasn’t something I was doing, so I couldn’t relate.
I honestly don’t remember.
It was years and years ago.
About five or six now, actually.
Which, yes, means it’s taken me years and years to realize that the grief starts early, sinks deep, and starts lying to you far beyond what you thought.
Or it’s just me. Because I’m denser than lead.
It was hard to read food blogs and read about how other people were living their best lives, moving on with their dreams, and enjoying the comfort of being able to make and eat delicious food when I was spiraling into the unknown.
I didn’t really internalize back then that there were such things as masks.
As “this is where I make my livelihood and I’m not going to tell you about the sad and awful because no one wants to hear about my marital woes when they come searching for a recipe for banana bread”.
As “this is my safe space away from what is going on in my life and so I’m happy and cheery here when I might not be elsewhere”.
This is in part because of my denseness, but also because I have almost always been unapologetically messily me on the internet.
Boundary lacking, if you would.
But part of chronic illness is about learning boundaries and enforcing them.
All this to say, not only have I gone back to reading food blogs and articles about food, I’m tentatively dipping my toe back into writing about food.
Step one of dealing with grief is acknowledging there is a wound, after all.
And being Chinese, we know that step three of healing hurts is eating well.
I hope you’re all well-nourished and safe, beloveds.
Until next time.