If you saw me mid-breakdown, you might be tempted to cross the street. Yes, there will be snot bubbles and tear-streaked makeup, and no, in this moment, I don’t care that my face is scaring people into assuming unexpected, new paths to their destinations. The emotional dam of chronic illness feelings has broken, and the too-muchness of everything is flooding my system. But this is actually a good thing.
I’ve lived with Lyme disease for years, so I’ve gone through the cycle I’m about to describe more times than I can count. Yes, including many a snot-bubble breakdown (single file, please, gentlemen). But over time, I’ve developed what started as a begrudging friendship with the total emotional collapse stage of the feeling cycle. And here’s why: at this point, I actually believe that falling apart is saving my life.
Don’t get me wrong, I fantasize actively about the day I can upload myself to the cloud (or whatever sci-fi solution Elon Musk has up his sleeve). I long to escape the restrictive confines of corporeal reality. But in the meantime, it seems my only option is to experience life through the body I have today, including all the messy human feelings that go along with it. And boy, are there feelings.
I can roughly organize the feeling cycle into five stages: numbness, crankiness, pain, breakdown, and acceptance.
As the snot bubbles should indicate, my stumbling efforts toward acceptance are a far cry from graceful. But I can sometimes see the emotional merry-go-round for what it really is: the struggle for acceptance within an otherwise totally hopeless and completely intolerable situation. And it’s only by letting myself fall apart that I gain access to the moments of peace that sustain me.
So for anyone struggling to love themselves through the suffering of disability or chronic illness, I offer my experience. I hope that it might provide the relief of identification, the understanding that you’re not alone, and maybe even enough trust to let it all fall apart when it needs to.
This is where I find myself most often. As in, I’d list this as my permanent address if I were opening a new bank account. I float just above the surface of my life, the pain or fatigue a familiar but mostly subconscious background hum. I wake in pain, immediately overwhelmed by the life in front of me. But it is way too early for feelings. Let’s pour some coffee on ‘em!
Nope, I’m not interested in touching down into my messy aliveness right now. I’ve got disassociation down to a science, and I have big plans, you guys.
It turns out my closet needs reorganizing and my plants repotting. Maybe it’s time to give the house a deep clean. In fact, today might be the day I finally apply for that writing grant I’ll never get. We are getting. Sh*t. Done.
And when one or all of those activities leave me feeling worse than before, I conceive a simpler but perhaps more elegant strategy for numbing the pain that never takes a day off. I’ll look at my phone until my eyes bleed!
But seriously, just because my body hurts doesn’t mean I get a break from my perfectionism and ridiculously high expectations. There are stories to write and projects to do! I flitter from one activity to the next in a state of anxious overwhelm.
The day rushes past in a storm of ever-greater chaos. I worry about the work that needs to be done for tomorrow, the friend I said I’d meet, the life that’s slipping through my arthritic fingers. I think about last night and my partner’s exasperated declaration. “We never do anything together anymore because you’re always sick,” he said with a tone. I’m getting dangerously close to feeling stuff, and this is when I decide to pull out all the stops.
I elect to use what little energy remains to declare war on the chaos. I wield my black pen in defense and let out a fearsome, metaphorical battle cry. My old friend, the to-do list, to the rescue! I hastily scribble agenda items and checkboxes on a piece of scrap paper.
A valiant effort, no doubt. But sooner or later, the unsteady scaffolding of denial collapses around me. My body is trying to get my attention. Whether or not I’m not ready to give it, my unwell body still puts the kibosh on my schemes for professional accomplishment, gardening adventures, closet overhauls, or whatever else seems like a suitable distraction from the right now-ness of pain or discomfort.
2. Toxic crankiness
The angry tantrum has been waiting in the wings for its moment in the spotlight. Momentarily, I have a vision of how anger would make its debut if my life were a (let’s be real, off-)Broadway show. For maximum dramatic effect, Rage would have a Charleston-style entrance in a bloodred sequined cape and matching baton, wearing the tortured expression of a reluctant child made to dress up in an itchy flower girl dress and pose for family photos. Smile!
That kind of energy might actually give me something to work with. What happens instead is a much less sexy/entertaining kind of anger. It’s the melty swamp monster of toxic resentment. Where rage is energetic, direct, attention-getting, this is slow and viscous— septic self-pity made manifest.
I see fit people jog past my apartment, watching shifty-eyed and Gollum-like through the cracks in my window shades. All those healthy folk in their coordinated workout attire whose bodies are still cooperating. It’ll come for you, too, my unsuspecting friends, I think with ghoulish delight.
If you’re the unlucky person who happens to live with me, you’ll get the silent scorn and oozing resentment of the pity monster first (surprise! It never goes over well). And since its debut is so unpopular with my partner, I decide the charitable thing to do is isolate.
With unprecedented magnanimity, I resolve to quarantine myself indoors. It is, after all, for the good of humanity. Yup, I am a regular spiritual superhero.
In isolation, I draw the blinds, don my scary pajama suit, and take to my bed. Some days, I do this with a sickly kind of glee, pleased as I am with what feels like my incredibly diplomatic decision. I have the f*ck-its, streaming tv, and an extra-large heating pad. Nothing else matters!
It works for a while, but eventually, the glee wears off. The pain, not so much. And after enough hours or days in bed, I cease to be human. I forget how to interact with people, and depression starts to whisper seductively in my ear.
You’ll never feel better, it says. This is the new normal. For good measure, anxiety does its part by reminding me of the many balls I’m dropping as I waste my days away in bed. Life is passing me by, and I’ll never catch up.
And finally, it’s self-pity that comes to finish the job. I’ve given up entirely on self-care activities and human contact by this point. No one understands what this is like. It’s so unfair. I do so much every day to take care of this stupid body, and nothing helps. The self-pity is taking me for a ride.
Eventually, I get to the place I always do, where it’s all my fault. And if it’s my fault I’m sick, then it must also be possible that the sickness is all in my head. Maybe I made this whole thing up because I’m weak and irresponsible. I’m crazy.
3. Abject pain
And that’s when it happens. The pain hits me so that I can’t protect myself from it with numbness or irritation. It can’t even be mitigated with self-pity. And this is the defining aspect of life with the unrelenting everydayness of chronic pain. It will get my attention eventually.
The pain, made exponentially worse by my efforts to ignore it, is now unavoidable. I wince at its sharpness and try without avail to find a position even slightly less uncomfortable than this one. Oh right, it’s not possible.
Again, the sinking realization that physical relief is not an option right now.
And just like that, I’m flooded with thoughts and emotions. They hit me all at once, but particular recollections come in sharp contrast, almost as if I’m reliving them. I see the skeptical expression, the furrowed brow of the Kaiser doctor who blamed me for my physical illness. As if for the first time, I feel the gut-punch of defeat when I learn that her idea of help is a psych referral.
She’s just someone with a higher education confirming my own darkest thinking. All my fault. I must be crazy. I feel hopeless and exhausted. I am so tired of fighting. I hate this.
Like a greedy child, the pain tugs at my pockets until I have nothing left to give. It uses me up completely.
I rarely remember this at the moment when the pain catches up to me, but it’s actually a good thing. If I could successfully avoid the pain with dissociation or anger, I’d live my life in fear. And when I live in constant fear of pain, I turn hard and cold. So best-case scenario, I’d scrape by bitterly. I would struggle along, barely holding all the pieces together, while my unlived life nipped threateningly at my heels.
But chronic pain doesn’t give me that option. There is no workable illusion of control available. This pain never calls in sick or takes a weeklong Hawaiian vacation with the kids. This kind of pain is inescapable.
I’m crazy, right? For thinking this is a good thing? Bear with me. The idea of pain makes me hard and bitter, but the experience of pain does something different. When I allow myself to really feel the pain, something unexpected and magical happens. Instead of breaking me, as I feared it might, it breaks my heart. It breaks down my habitual defenses in a way that makes room for a kind of tender connectedness that puts suffering into sharp perspective.
And no, I won’t have learned my lesson. Next time I make my way through this emotional cycle, I’ll again resist the pain until the last possible moment.
From outside the feelings, I can see that it’s because of chronic pain that my heart has softened so much to the suffering of the world. Pain stretches my capacity for discomfort like nothing else.
There’s something so humbling about the kind of pain that can’t be fixed or assuaged, the pain that only settles for acceptance. It is teaching me how to love without holding back.
So when the full weight of the pain and illness hits me in a way I can no longer manage or contain, the only option I have is to let it all fall apart.
And here she is, people: the trainwreck we all came to see. Think Britney with the umbrella. Or Charlie Sheen, minus the enduring aplomb and disposable income.
The feelings flood me in huge waves, and I cry without inhibition. I heave with grief as my body produces sounds that sometimes surprise even me. Much to the horror of those around me, I’ve been known to blow my runny nose on my shirt sleeve. And in truly desperate times, I resort to the most ladylike nose-blowing technique of them all: the snot rocket.
I let myself weep for as long as I need to. Sometimes the tears keep coming long after I think they ought to have stopped. Sometimes I wake from deep sleep to cry more.
To the degree I’m able, I forgive myself for all the parts of this experience that feel cringey or too much or not allowed. I put my hand on my heart and say sweet things to myself in the tone otherwise reserved for adorable dogs.
From a distance, I can see that I’ve only learned how to be a genuinely loving custodian of my inner life because of these breakdowns. Before I reach the point of collapse, I trick myself into thinking that it’s someone else’s job to rescue me from all this pain, fear, and angst.
But when I fall apart like this, with no safety net, I see that I’m the person whose acknowledgment and love I’ve really needed all along. With no other options, I arrive at emotional ownership. And this is where the possibility of freedom opens up.
Ah, Serenity, late to the party as usual. In the quiet after the storm, I feel free and lighthearted. Somehow, my sense of humor has been restored, and I find myself connected and at ease in the middle of my life. I am overflowing with loving appreciation for the pain each of us experiences. Being human is so tender and weird.
For a few sweet moments, I can feel the sun on my face and the crispness of the winter air. I can see clearly for what feels like the first time in a while.
I can see that my partner isn’t actually out to get me. He’s struggling to accept an impossible situation in exactly the same way I am. I even feel compassion for that Kaiser doctor. I remember that how we treat the suffering of others is a reflection of how we treat our own suffering. Despite everything, I’m grateful to live in my own body rather than someone else’s.
These small windows of acceptance sustain me when life feels like too much, and I’m tired of living it. In a very real and consistent way, they save my life.
I can’t think or force my way into acceptance. I can’t surrender my defenses because it’s a nice idea or because I should know better by now. So far, there’s only one way I’ve found to get this kind of emotional relief, and it ain’t pretty.
But here’s the thing: letting myself fall apart works. And each time I fall apart, I seem to fall back together. Even when I fall asleep in desperate pain, crying, with nothing left for tomorrow, I still seem to wake up to a new day.
For our sake and the sake of a world in chronic pain, I hope we keep letting our hearts break. I hope we keep falling apart. I hope we don’t give up on relief, even if it isn’t the kind we want so desperately.
I know what it feels like to let the pain and misery harden my heart, to feel completely alone and different living with the alienating experience of chronic illness. But I also know what it feels like to let the pain be the thing that makes possible my vital connection to the world around me. For better or for worse, suffering is our common ground. And if I can have gratitude for what the pain has taught me, even just for this tender, fleeting moment, maybe that’s enough.