Category Archives: chronic disease

What Parent Guilt Shows Us About Privilege Guilt | Guest Post

Hi! This essay is a guest post written by my friend, Patricia. It explores her perspective as a white chronically ill parent of a white chronically ill child, and draws parallels between her experiences of ‘parent guilt’ and ‘privilege guilt.’

The stories and health details about Joe and John are shared with consent.

Content note: this post includes discussions of medical experiences & symptoms including surgery & skin wounds

Here’s Patricia!:


Hi. I am thrilled to be here talking with you, my fellow Fans of Charis. Let’s dive right in.

If you and your child have chronic illness and/or are disabled, it is very likely that you’ve experienced some guilt about it. There’s plenty to choose from: the guilt that comes with parenthood and the guilt that comes with passing your illness on to your child. Today I want to expand on that even further. In this historical moment of possible structural shift, at this possible tipping point away from the world that encouraged the murder of George Floyd and so many others and toward something new, I want to look from our parent guilt to our national guilt. (To allow us each to think about our various privileges, I’ll call it “privilege guilt.”) Today I would like to ask whether how we respond to our parent guilt can teach us something about how to move forward as a guilt-stricken nation.

First, let’s consider the chronically ill disabled child. Let’s start with Joe.

***

If you already know the comorbidity story by heart, feel free to skip this section.

I gave several terrible gifts to to my son, Joseph. Some are hereditary things that I also suffer from, and others I can say I gave him by virtue of the fact that it was my body he was formed in. First, I passed to him a laxity of the connective tissues called hypermobility syndrome, a mild form of Ehlers-Danlos (EDS). As his bones grew, it slowly became apparent that he also had something termed “miserable misalignment syndrome,” aka “torsional abnormality.” Basically, this meant his shin bones were rotated about 30 degrees off center. Together with the EDS, this caused countless dislocations of his knees and an inability to walk or stand for more than a few minutes. In junior high, after years of PT, he underwent a series of astonishing corrective surgeries that have allowed him to walk with less pain and far fewer dislocations, although he still has trouble standing and walking more than a couple of blocks.

A picture from behind of a white-appearing healthcare provider with white lab coat with her hand slightly on the back of a young white teenager's back. He wears a blue hospital gown and takes a walk using a walker down a hospital hallway
Joe walking after a surgery. Author’s photo.

Continue reading What Parent Guilt Shows Us About Privilege Guilt | Guest Post

“The God of All Doctors,” Sterile Environments, & Dirty Medicine

I held a tissue over my face with both hands, pressing my fingers gently into both eye sockets to catch water before it flowed down my cheeks. I breathed in as waves of emotion erupted faster tears and a scrunched up face to hold them in.

I had begun crying mid-visit. Again.

Two years before, I had sat in the same chair and cried the same tears, but today I felt different. Stronger, in a way. Less afraid. The tears felt good.

I heard the doctor stop typing and swivel their desk chair to face me.

I breathed out. Continue reading “The God of All Doctors,” Sterile Environments, & Dirty Medicine

I’m Just Another Lazy Faker Living With Chronic Disease

Staying alive is my job.

Taking pills, managing side effects and flares, figuring out the best mix of treatments for each day’s changing symptoms. Playing medical mystery with my own body every 12 hours.

This is my life’s work.

Managing doctor conference calls and meetings each week to negotiate the most effective care to keep me alive. Navigating the ever changing healthcare system, using my body as a bargaining chip for its own survival through treatments. I am my own case manager. Continue reading I’m Just Another Lazy Faker Living With Chronic Disease

The Doctor Will See You Now

It’s the season of dropping things,┬áhips and elbows knocking door frames, “Will this flare ever end?” weeks, buckling knees on flat ground, brain fog competing with memories of the years when I felt younger than my age.

It’s the season of “But you don’t look sick, you look Great!” and “Have you tried yoga?”

It’s the season when, as soon as the door latches shut, the safety of our homes becomes the hell of letting our guards down, removing the mask. Our yoga is the inching off the bed on our bellies, gripping the prescription bottle to suck down a pill and doze for 30 minutes in half-inchworm-half-human-pose before grasping our walker to pee in the middle of the night with shuffle-steps amid stifling stiffness and the pain of partially fused joints that used to swim in the joint juice of cartilage. Chronic yoga.

“Yes, I already do yoga. Maybe I’ll show you sometime.” Continue reading The Doctor Will See You Now