The Problem with Chronic Illness Positive Thinking Blogs by S. Blossoms
By: Stephanie Blossoms
Tags: Blog, Prose, Chronic Illness, Chronic Pain, Disability

I am 28-years-old and I cannot recall the last time I was not in pain. I don’t remember what morning looked like from the eyes of a healthy, functional body. I can see caliginous pictures of my child self running freely, climbing ably. But, the ground has no structure, the trees are absent of detail; in my mind’s eye, even my face is blurred of lineaments. The images resemble the lost, faceless ghosts of Bly Manor. Eroded by time, the point of their existence is lost to the decades that swallowed them.

But, the impalpable description of this able-bodied past makes it’s prominent absence digestible; We do not grieve what we cannot remember.

I can recall being in less pain. I vividly remember requiring only ten to fifteen minutes to coax my limbs from my mattress. I remember working full time — in a professional kitchen, mind you — and sufficiently coping with the pain because I loved my job.

I remember rock concerts, brunch dates, bicycling, Friends’ Night, Saturday morning farmer’s markets…

This Monday morning, rain reminds me of how distant those memories feel: Like the miles of a lifetime. Actually, its been three and a half years. The new skin of my scars inherited through “kitchen life” is still a vibrant, glossy pink. The emotional and psychological wounds from losing ability still burn brightly. Their bite isn’t quite gone, but I’m still healing. My other muscles and bones are still healing, too.

Over the past several years and, specifically, the past several months, I have read hundreds of articles associated with chronic pain. From new research on effective management to anecdotal blogs found in the results of “how do you get out of bed every day?” -type searches. Those search results, a category their very own, have led me down elongated spirals of reading blog after blog, page after page, post after post. After each twisting journey, I always came back to the same, unwavering pit in my gut. And, still, no one has actually answered my question.

Instead, what I found (read: couldn’t miss) were endless collections of encouraging words, positive perspectives, and motivational mantras, much of which are the same concepts in different packaging. It almost seems as though every one of these personal blogs is just a copy-and-pasted clone of the other. Pressed through an Instagram filter, and spit out like real-life solutions.

First, the proverbial triumph-over-tragedy opening: “Twelves years ago I was diagnosed with [disease/illness/disorder] …I decided that I would never let it stop me!”

Next, the personal progress report: “I know when I wake up, my [condition/ailment/disability] will still be here. But, every morning, I just get up.”

Then, another paragraph with the same, basic structure: “[Disease-related limitation] can totally suck. But I just get up! It is that simple!”

Followed by myriad analogies of the “just get started” concept: “If you just put one foot on the floor, you’ve already succeeded!”

Finally, various “purposes” or “passions” that magically fuel physical and mental energy and totally evaporate pain:

“Just pursue your passions and your problems disappear,” “You can accomplish all of your dreams, just within your limitations,” “God doesn’t give us anything we can’t handle,” “You have to change what you’re manifesting,” “Just remember you do this for your kids/partner/the possibility of a smile,” “Life still exists if you just…”

It’s that word again. Just. Because coping with disability is easy. Just. Because it’s only small steps accumulated. Just. Because illness is only one part of you.

This skin-deep advice is plastered all over the internet. This is the advice given to people who are struggling, suffering. Quite frankly, I cannot fathom what these people are talking about. This formula that says purpose + simply deciding to proceed = being no longer limited by your illness. Where is the reconciliation between crippling pain and the capacity to actually move? In reality, chronic pain affects Every. Single. Part of you. It influences what goals you set, what responsibilities you take on, your activity level, your work life, your social life, your relationships. All of it.

I respect and appreciate the role positivity plays in life. I understand the shine and shimmer of inspirational words. But, when every blog and every page is a conglomeration of motivational quotes, cliche phrases, and supposed success stories, all of it reads wishy-washy. Especially in the glaring absence of the truth of the struggle. Where are the paragraphs detailing the body’s resistance BEFORE you just get out of bed? Where are the people who, like me, need several hours of stretching, medicating, fighting before starting their day? The people who physically can’t just shake off the pain and start moving? I know I’m not alone. Matter of fact, I know probably 99 out of 100 of those bloggers also can’t just get up as soon as their alarm starts ringing. I know, like me, these people experience days where leaving bed is completely off the table. Why is no one talking about it?

Because it’s ugly. Because no one cares about your sob story. No one really cares about your success, either, but readers have to mine “solutions” from somewhere.

We’ve been socially conditioned to look for “the bright side” of things. “Silver linings.” To always end on a “positive” note. For example, after venting to a friend about whatever crappy situation you’re going through, you wrap up the vent-sesh with some variation of “Well, at least its not as bad as [group/ community/other human]’s [unfortunate circumstance/event].” Or, after a detrimental loss, diagnoses, or even just a shitty deal, out comes this compulsory need to illustrate some glimmer of hope by undermining our own experience. A compromise because the weight of reality is much too heavy. A reward for the listener because the truth is too tough to hear.

Who actually benefits from this? Is it the same people who demand you water down your truth because complaining is yucky? Personally, I find it difficult to see honesty in dilution. How do you learn the lesson of a parable if you don’t know the whole story?Additionally, people commune in suffering, not just in its overcoming. I am not suggesting every one giddy up to the bandwagon of self-pity. I am suggesting we, as a society, learn to stomach disability.

Not by consuming more poverty porn or dishing out plastic sympathy, both of which serve the only purpose of making the originator feel better about themselves. Instead, by deconstructing the stigmata of chronic pain and illness as weak, pathetic, and ugly. By obliterating bullshit constructs that equate silent suffering to strength and integrity.

Of course, I know as well as anyone that you can’t win a war by aiming your cannons at society. The battle is with the individual.

I try my damndest, every day I can muster the energy, to remind myself that being less able does not make me less human. And I recognize that none of this “happiness” glitter validates the pain. No blogger or Pinterest board offers actual community in the suffering. Slogans like “you are never alone” don’t actually help anyone feel less alone when void of the grueling, impossible, and uncomely experiences that actually represent commonality.

So, if you’re reading this, I want you to know that I’m with you. I, too, am isolated and exhausted by my invisible pain. Being surrounded by folks who have never dealt with a chronic condition and, therefor, will never understand it, really fucking hurts.

Let’s take that pain, that depression, and build a community where we can talk about it. Where we can lay bare what our days are really like without fear of being judged for “complaining” or accused of hyperbole or feeling sorry for ourselves. Even just a Facebook group of individuals going through the same thing will help immensely. This essay is my cornerstone for building such a community.

I am still figuring out how to create a fulfilling life for myself with my limitations. I have a few ideas but don’t yet know how I going to do so. What I do know, and my advice, is this: You absolutely have to allow yourself to be honest about your situation. You need an accurate scope to begin calculations. Only when you see things for how they now are, can you grieve what they are no longer. After you have allowed yourself the space to grieve what you have lost, be it mobility, functionality, your career, relationship, will you be able to move forward with your life.