Chronic Pain — Behind the Curtain
I wrote this through teary eyes during one of my particularly hard pain days this past January. Without a consistent 24 hours of low pain since before Christmas break, this was written from an incredibly vulnerable place, both psychologically and physically. I didn’t intend to share it and wrote it originally just for myself — turning to my journal, to let the words flow out of me to try and discharge some of the overwhelming emotion I was feeling.
It’s a true reflection of the exasperation and frustration that can come with long term pain and chronic illness. Ironically, it was written just days before I got some clarity about what’s been causing my severe and debilitating symptoms from the slew of bloodwork, and other testing that I had done in December (where I found out I have lyme disease, mold illness, gut dysfunction, adrenal fatigue, hormonal imbalances and more…). Though some of the pieces of the puzzle I’ve been trying to solve for years have now been found, the feelings of exhaustion and overwhelm remain, as relevant as ever. There is still no definitive and clear path back to wellness and an ability to function more normally in the world, but I am deeply grateful for a new direction and the hope it carries.
I also hope that sharing this description of one of my low points can help one person and make them feel less alone. A cycle of bad pain days, months or years is absolutely soul crushing at times. I work hard to cope with my pain mindfully and from a place of calm acceptance — but that is a fluid state. And sometimes I must work through this place, of darkness and sadness, before I can return to a more steady baseline.
Whoever needs to read this, I hope it finds you ♥️
And if you know someone living with chronic illness and chronic pain, may this be a window into some of what happens behind closed doors and blackout curtains.
It isn’t one day that breaks you. It’s the constant day after day after day after day…. pain that wears you down. It’s exhaustion that’s crept into every ounce of your body, each little cell and crevice and muscle. It’s no matter how much you look for the good or cling to momentary lifts of pain, a constant return.
It feels like turbulent ocean waves crashing against a large ocean rock. The waves pound and over and over and over. Though the rock is steady, it’s stuck bearing each crashing wave. It cannot move, it cannot be helped; all that can be done is to witness the powerful storm with patience. The solid rock is slippery to touch, seemingly impossible to scale, difficult to support; and ultimately, must weather the assault alone. You wait for the ocean to lull, for a break in the storm, sometimes if only for a moment, until the crashing begins again.
It’s being broken by feeling outright despair at the outlook of your situation. A maze, an obstacle course that you know might take years to figure out, and you’ve already spent years trying to manage. It’s different opinions, tests, practitioners, protocols and treatments. You know that you have it in you to make it through, however long it takes to find light at the end of the tunnel, to stop these days from repeating. You know that you are committed, that you are strong enough; but this day and this moment feel insurmountable.
It hurts, from the moment you wake up. You realize your slumber has not been a restful one, because the pain is there, even before you open your eyes or your conscious mind becomes aware of it. It has settled in, and made itself at home. Often I try to go back to sleep hoping the pain will subside, but even if I can manage to drift off, the pain follows me in and out of consciousness. I walk to the bathroom at 2am, desperate to keep myself in a half-sleep, so that I won’t become awake enough for the gravity of the pain to sink in. I plead with the universe; beg that just tonight I might be able to crawl back under the covers and escape it all for a few hours, but that hardly ever works. Instead, I lie in the dark with this monster, feeling it throb and pulse, knowing that if I can manage sleep, it will be there when I wake up again.
It’s struggling through the next morning, holding back tears about the fact it still hurts so much. Getting up to refill my water, trying to do the “right” thing and hydrate. Needing to grab the doorframe and pausing as I cross the threshold of my room, while the world spins for a moment and blackness descends over my field of vision. Pain ripples out around me like invisible waves — the dizziness making this day, this experience, seem even farther from reality. I try to think back and ask myself…when did I get to the point where just standing up with this makes me so dizzy? I brush it off, tell myself it’s a one time thing. To have this happen consistently would be too scary, too big, so I move on.
It’s pacing in my apartment and then curling up in a ball in bed, back and forth, on repeat. Listening to audiobooks to try and escape what’s happening, but reaching the familiar threshold over and over again where the pain becomes too intense for distraction; it throbs and stabs and demands all of my attention. So I go to the shower. As I sit on the floor, letting the steaming hot water cascade over my head, for a moment I exhale and welcome the moment by moment sensation and relief on tortured, stabbing eyes. I find my self wondering, “Well…what if I just stay in here for a few hours? Would that be crazy?”
And then it hits me. This is crazy. This is constant. This isn’t just a bad day. This is a day that keeps happening over and over and over again. That’s what makes it so bad, so intolerable, so heartbreaking — it just won’t stop. It feels like a cruel joke stuck on repeat. Any glimpse that you’ve escaped the cycle’s viscous grip is so short lived, it’s always just a matter of time before the fog creeps back in, and the storm rages again.
It’s always explaining away symptoms that don’t quite fit the description of your diagnosis — knowing deep down that you are becoming less and less functional and not knowing why. Feeling each day like less and less of a person. Does migraine make socializing this hard? Does migraine make you unable to hold a conversation, even on light pain days, because you can’t maintain eye contact and follow what the other person is saying? Do these other diagnoses — cyclical vomiting syndrome, gastroparesis, IBS, interstitial cystitis, anxiety, occipital neuralgia, chronic fatigue syndrome — all really make sense?
You blame your declining functionality on things like the glare of screens being triggering, on light sensitivity, on a particularly bad flare up – but is it really normal to be so very unable to muster energy to communicate, to even exist like this? You feel so heavy and weighed down by emails and texts you know you need to respond to, but don’t have the mental energy to open them or string back a reply of even a few words. You’re trying so hard to push through symptoms that keep getting worse, a brain that just keeps getting more difficult to use and think with.
It’s watching strangers from your window walk down the street, and genuinely marveling at how they manage to do the most basic things. You wonder how you used to do those “normal” things too. How do they handle a full eight hours outside of the house for work? And then go to dinner with friends? And wake up and do it again the next day? Just a portion of any of those activities would require days of rest and recovery on either end for you. Those experiences seem so far from your reality. When did a trip to Walgreens to pick up your prescriptions (even with a driver) become a “taxing” activity for you?
It’s not knowing or recognizing this body, your body, that is so full of symptoms that hurt. Nausea, gas, bloating, eye pain, head pain, neck pain, fatigue, diarrhea, sharp chest pains, lightheadedness, constipation that brings you to tears, vertigo, bladder pain, anxiety that makes your heart race, brain fog that makes you feel like you’re high all the time. What is all of this?
You think to yourself, “I am trying too hard to be well, to feel this sick.” And you don’t resonate with all the reasons you’ve been told you feel this way. Doctors continually undercut your experience and blame anxiety (what else can they say when no treatments work for you?). These statements chip away at your intuition, that is telling you this is very real and not all in your head. But you bend and break at their suggestion that your pain and symptoms might have psychological roots, and as a result, question yourself and your experience constantly.
If you can think yourself sick, can’t you think yourself well? Is this something you’re creating? Why can’t you just get better control of this apparent deep-rooted anxiety that is ruining your life? Don’t you see? You just need to fix this. It’s created by you. Those messages make you crumble. You trust the professionals, you want to believe them. Jeez, you want to feel better so badly that you’re more than willing to accept the possibility that all of this is psychosomatic in nature; that you can heal by harnessing the power of your mind and thinking patterns. That with enough inner work and emotional healing, you can change your reality, eliminate your pain.
So you do whatever they tell you. You journal, see health coaches, try hypnosis, write affirmations, meditate, visualize your cells healing, activate the relaxation response, get regular acupuncture, try working with therapist after therapist. You also try more medications than you ever imagined taking in your life; abortives, preventatives, injections, pills, powders, nasal sprays…you name. it. You do it all — and although you gain greater awareness and build a large toolbox of coping skills, nothing changes. You still feel awful. This day is still on repeat.
What does that mean? Does it mean you check yourself into the hospital like your neurologist has suggested? For a week of infusions despite your gut telling you that isn’t the answer? Even though you know answers aren’t there, you consider it. You’re in so much pain, so stuck, how could you not at least consider it? Maybe you’re so exhausted, hurting so much, so tired of trying to get through these days over and over and over again that it is time to give it a try? Who cares if it is the solution or not? Help and relief is so enticing, even if only temporary. A break, something, anything to interrupt this nightmare. Drug me up, and just please make this stop. For a few days or a few hours. Anything.
But as swiftly as that idea enters your mind, it exits. It isn’t the answer. You know it isn’t. You’ve been through so many infusions and hospital visits that you know it will likely only inflame things. So you don’t do it. Instead, every day, day after day, you just deal. You somehow continue to get through moments where you’re so infuriated, exasperated and swallowed by pain that you want to cry and scream at the top of your lungs and beg for help . Please someone, please, just help me not feel like this. Please help me to stop this hurting. Unfortunately, you’ve also been dealing with this long enough to know that an emotional screaming breakdown won’t help either; it isn’t an answer or an option. It will actually probably make you feel physically worse, then crazy, then guilty. Then fuel worry about psychosomatic roots of your symptoms.
So on these days, and in these moments, you stand as firm as the rock in the ocean. Each wave of symptoms hurt and crash with ferocity against you. It feels like someone is repeatedly throwing a bucket of ice water, or boiling water, or something painful and affronting directly in your face. You really don’t know how you’ll handle another day like this. Unbearable moment, after unbearable moment, but you also know that finally, eventually, well past when it is needed; there will be a moment that gives way to a break in the storm. Even if it’s only a few hours or minutes, a break will come. It always comes.
But these days? They are heartbreaking. One moment at time, they simultaneously weaken your spirit and build resilience you shouldn’t have to develop. In lower pain moments, you don’t admit or talk about just how much these days hurt. But when you tune in and listen; you can’t deny feeling your tired heart, hearing your hopeless spirit. You know this pain exists alongside your courage and strength, but you also know that these days have their toll. You can’t lie and tell yourself that they aren’t crushing and discouraging. Instead, you promise yourself to listen with compassion, to keep breathing, and to love yourself no matter how broken you are left by this.
I truly hope this can provide a glimmer of hope and comfort for someone. Being stuck in a cycle of bad pain days is something that is incredibly hard for me to put words to, and to share. To anyone else who fights unrelenting pain, I see you, and I am sending you all of my love. You are a warrior. 💪