The Etiquette of Navigating a New Life

Ten distinct positions: there are at least ten distinct positions I’ve discovered in my week of being bed bound. With an adjustable bed, new horizons are unlocked when it comes to functionality, comfort, and convenience. The head of the bed comes up into an almost fully upright position, while the legs can extend a foot or more vertically. Zero gravity is even an option! For people like myself, having the ability to quickly get your legs above your heart while laying down is crucial. These electric beds do it all. Who knew?

The rolling calendar year of 2024/2025 has been my year for being bedridden. I estimate I’ve spent a full six weeks or more confined to this very space; a space that once only brought me immense comfort which has now become my prison.

I’ve never been a healthy person. At three days old I was diagnosed with a nickel allergy, after coming into the world with a benign heart murmur. My parents fed me special hypoallergenic formula, as I had chronic constipation from everything else. The diagnosis’s and issues just kept coming. Environmental allergies, atopic dermatitis, eczema, and exercise-induced asthma followed before I even turned ten. Several adults remarked that they’d never seen a child have so many separate skin problems, even the elementary school nurse.

The teen years weren’t any better. As my hormones developed, so did more symptoms. Hidradenitis Suppurativa, the auto-inflammatory disease I have, popped up at 15, although I wouldn’t get a diagnosis until I brought research to a dermatologist at 24 self-advocating. After examination, it was confirmed. I was told it was a fat, unclean persons condition and was told to use antibiotic wipes and antibacterial soap. Prior to that, when I was 18 an OBGYN insisted it was herpes, despite my telling her I’d never yet been sexually active. She tested me anyway. Go figure, it wasn’t herpes. Now we know, of course, that it’s none of these things. Hidradenitis Suppurativa has nothing to do with cleanliness, as it’s an auto-inflammatory condition in which the body attacks its own healthy cells; similar to Crohn’s disease and Rheumatoid Arthritis. Research also suggests that fat people do not acquire HS, but that HS causes insulin resistance that makes people fat. Thus, a condition that I and millions of others have has rapidly evolved from being completely our own fault to 100% not our fault. Funny how that happens in our ablest world - especially in medicine. I digress.

Postural Orthostatic Tachycardia Syndrome and Dysautonomia have been a part of my life now for 5 years. Still, I’m not acclimated. Thankfully, I’ve read many instances where it took people years to come into full acceptance. Somehow, now I feel less delinquent in my emotional reconciliation process.

What forced me into bed this week was a combination of POTs triggered by illness, and an adverse drug reaction. I got a virus that turned into bronchitis, which exacerbated my asthma, which required steroids so I could breathe. Despite having taken prednisone many times in the past for asthma, this time was horrific. I had a severe psychological and physiological response requiring an ER visit, with some fluids and medicines to counteract the side effects. Unfortunately, these side effects can last weeks or even months. The diagnosis is one of “take it day by day” and “rest, rest, rest.”

I’ve been resting for a week now. Laundry is piling up. The kids are aggitated; why can’t we go to the pool? Mom is sick, AGAIN?! Mom is sick again. Lately, it seems as though mom is nothing but sick.

Not wanting to be a burden on my family is the hardest part of accepting these rapidly fluctuating new normals. I’ve cried each day since I’ve been ill, aching in my chest - wishing my children didn’t have to have a less than stellar mother. I’ve crumpled into my mattress, defeated, more times than I can count.

Even with the deep, biting emotions that fill my free time, there’s so much nothing in the air. Too much nothing. Enough nothing to bring on more hypothetical situations, creating unintentionally manufactured emotions that continue to fracture my sense of self. How did I, a person aware and practiced in self-compassion, get this way?

The world is our mirror. It shows us everything we are up against, everything everyone wants us to be or not to be, the expectations of life. Mirrors, as we know, though, can be deceiving. Optical illusions occur all the time, lest we forget. And we do.

Countlessly I’ve been told by social media, acquaintances, friends, and even close loved ones, people I trust, that I am somehow not enough. Not enough the way that I am. Most do it unintentionally, unknowingly. Hell, I’ve been guilty of naively doing it to others in the past. Thinking I know better than someone else knows themselves. Humans really are an arrogant bunch. The problem is that these statements erode trust. They break a persons trust and love with themselves. They hurt. They destroy.

Time ticks by so slowly in this emotional bay of misery. It’s not even where I want to be, but due to the adverse medication reaction, this sort of despair permeates everything.

I wonder if I should use the time to check in on friends. Goodness knows I haven’t been able to do that in a long time. Life has been a steady game of ping pong; back and forth, bouncing between sickness and heaps of endless work. Then I think, “I don’t want to get to a point where I’m contacting my friends a lot of the time when I’m sick.” Then I ponder why it matters. It matters because I don’t want my friends to perceive me as needy, weak, or incapable. The realization leaves me devastated. How does one even have friends under these circumstances? How will they relate? Can they even relate? Can they see me, feel my heartache?

Thus, here I am in this pergatory, this limbo place, of wondering what the etiquette of navigating this new life with disability is supposed to be. How do I learn to trust again? How do I make myself enough?

Enlightened ones would say I already am enough, no matter. Yet, the mirror tells a different story. The teachings I believe say that in order to be enough you must just be. Now I must really focus on the faith of belief. Is it the bed that is my prison, or the world that’s so constricting? How does one conjure any sort of faith without trust?

It’s easy to become consumed. Easy to slip into the abyss. To hit that emotional rock bottom and wallow. What else is there to do when your most trusted people don’t understand?

Somewhere in the black sea of defeat, I tire. Eventually, the overwhelm of suffering suffocates me, and I enter a realm of exhaustion. Of nihilism. A place of no consequence.

From there, I catch my first glimmer of hope. I have a feeling that’s neutral, or even slightly positive. I hear birdsong outside my bedroom window, and am reminded of the joy of nature. Is that the start of a smile curling my lip? And so it goes.

Life in one moment seems so cruel, so cutting. Yet, in another, I smile because the birds sing. Life isn’t so bad after all.

Feelings of joy, love, and peace trickle in through the crack in the walls of my fortress of suffering. Washing away some of the pain and discomfort of being alive. Suddenly, I remember.

I remember what love feels like. Love is my favorite home-cooked dish from a husband who has been an unwavering support. It is his gentle kiss on my cheek. It is helping me put my compression socks on when I’m too fatigued and weak. Love is my husband telling me that my disability is never a burden, that I am never a burden - and meaning what he says when he says it. My husbands love permeates the fortress of suffering, softening it into acceptance and gratitude. Acceptance that what is will be, and gratitude for such love. Gratitude for living, to be able to have this beautifully gut wrenching experience.

Here I am, writing to you from bed. Living. Accepting. Loving.

It doesn’t mean I won’t ever struggle again with feeling low or not enough. What I have learned today, though, is that love can be the light that guides us through.