It’s an early summer evening, and it’s warm out. We’re waiting to be seated, and someone says, “Let’s sit out here. It’s beautiful this evening.”
My friend turns to me. “Will that be ok?”
I can feel everyone’s eyes on me as I quickly scan my options. Outside, there are long, high tables with backless bar stools; inside, there are comfortable low couches, but it looks dark and gloomy in comparison. I know I need to choose a soft couch, but I can already sense impatience and irritation, and under the weight of people’s expectations there’s no real choice.
“Yeah, sure,” I answer. Swallowing my embarrassment and rising panic, I climb stiffly onto a stool. Perched up there, the metal is unforgiving under my aching joints. My feet can’t reach the ground to stabilize my pelvis, and electric shocks of pain are already shooting through my insides and down my legs. I grimace discreetly and take a sip of wine, hoping desperately that the alcohol increases the effect of the painkillers I took earlier. As the night goes on and the pain worsens, it’s a battle to stay upright. I can barely hear for the raging thunder in my ears, and the brain fog makes it hard to retain and respond to any information that makes it through.
Stumbling into bed later that night, I tell myself I won’t do this again for a very long time. And I don’t.
This outing marked the beginning of a long period of social isolation–the final brick in a wall that had been steadily building. The levels of this invisible wall are made up of many different bricks, but they all have the same treacherous origin: attempting to exist within a world where my experience is entirely alien, the environment hostile to my body, and the people careless and uncompromising.
The wall is built on a foundation of excruciating pain day after day, a diary full of doctors’ appointments, trialing medications with hosts of grim side effects, and fatigue so heavy that even scraping myself out of bed to brush my teeth is an insurmountable challenge. The bricks are glued together by all the times I have confided in others about my disability only to be shut down, the times I was given up on because I constantly had to cancel plans, the times my pain wasn’t taken seriously. The entire wall is fashioned out of the people who’ve held it against me when I couldn’t respond to texts, who questioned me when I used spoons–or the units of energy that disabled people use to take on daily activities–for one thing and not another, and the friends who said they were there for me but never were when it counted.
This invisible wall has been strengthened and reinforced by the constant barrage of ableist, trivializing, and invasive comments. What’s wrong with you? Have you tried visualization? Here, have this book on chronic pain (that explains it’s all in your head and you just have to think positive). I got used to cutting myself off from my feelings so that I could continue moving forward throughout a day, as well as recounting personal and traumatic experiences like I was discussing someone else’s life. After all, people feel entitled to a chronically ill or disabled person’s personal information.
But make no mistake; my audience doesn’t want to be bored with the endless monotony of suffering that is by definition chronic pain. Nor do they want to be disgusted by the gruesome details that can come with illness and disability. So, either I share too much or not enough, and the perfect balance seems to require surgically removing my body from my mind. I’ve been forced to separate the heavy sediment of my life from my words so that I could serve up as what I like to call “purified water,” or complex, often traumatic experiences condensed into interesting yet digestible facts that can be easily swallowed and forgotten.
Eventually, as I became more and more isolated, and the loneliness grew into another kind of pain, I turned to the chronic illness and disability community on social media. There, I frequently read about experiences like mine: a wheelchair user being left to wait on the pavement outside while their friends went into an inaccessible shop or café; someone agreeing to go to an “accessible venue,” only to realize when it’s too late that this venue has stairs; countless people dismissed, let down, and left behind by friends and an uncaring society.
As a chronically ill or disabled person, it has quickly become clear that allyship and inclusion are oftentimes just theories that make abled people feel good. Once confronted with the awkward, boring, and often inconvenient reality of truly supporting me, the understanding silently slides away. I’m left out in the deep with no safety net. When I don’t have the energy or strength to swim, the safest choice is to never venture out at all.
I have been set apart by these invisible walls. And although it’s not in the coping strategy I would have chosen, the wall has led to a recalibration, a re-evaluation of my life and everything within it.
I have lost friends when I have no longer been able to burn up spoons for a friendship that could have been priceless, I have learned how to set boundaries because I’ve been forced to say no or suffer very real bodily consequences. In the loneliness I have been stripped of all outward distraction and performance, and through painful betrayal and disappointment, I have developed discernment, standards, and the strength to choose myself first.
It has been a process of shedding, but I hope through this I have made space to welcome new opportunities, and friendships, into my life. Though the invisible walls are still very much in place, there is now room within myself for those who can see through them.
The light that first shone through the walls around me came from the online disability, chronic illness/chronic pain community. This community has continued to be a source of affirmation, companionship and mutual caring. Once such instance that captures the supportiveness of this community came during a time when I was struggling through a grueling recovery. A chronically ill friend nominated me to receive a Honey Letter from Honey-Pot Post (@honeypotpost). The founder of Honey-Pot Post is Tana (@confusedspoonie), a nurse and fellow spoonie. Tana delivers personalized, hand-written letters to disabled and chronically ill people dealing with isolation and loneliness all over the world, and Tana does all this free of charge, to bring comfort and connection.
Receiving this Honey Letter in a time of profound loneliness reminded me that there are humans out there who understand what I’m going through, who don’t judge my long absences and unanswered messages, who don’t ask if I am better yet, who validate my feelings and hold gentle space for my most painful days and thoughts. It reminded me that while we are lonely, we are not alone. Our walls may separate us from the world, but these walls also enclose a warm, vibrant, loving community of some of the best people I know.
