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What I Mean When I Say 'I Am Functioning' as a Person With Illness

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I had an odd interaction with a man I went to school with the other day. He was expressing his frustration at his experience with chronic illness and struggle with depression, and when he asked me about my chronic illness, the conversation went something like this:

Him: “I’m struggling with A, B, and C. Every day is a horror.”

Me: “Most days I can function, but it’s been hard, and I’ve been struggling.”

Him: “Well, at least you’re able to function, I can’t even do D, E, or F.”

Many things stood out to me about this interaction. The first was that I had not spoken to this man in over seven years, had no idea what prompted him to reach out to talk about his illness to me (as I don’t post on social media about my chronic illness), and didn’t know him very well even while we were at school. The second was that the conversation was turning into a Deadpool-style pissing match between Wade Wilson and Vanessa Carlysle about whose life was worse, and I had no desire to participate. The third was that for me, the admission that I was only able to function most days was a big thing for me to admit, and he dismissed it entirely. He wrote my experiences and my struggle off because I had said that I am functioning.

I do not speak to this man anymore, but this conversation stuck with me. What does it mean to be functioning? What does it mean to be functional? What do I mean when I say that I am functioning, as a person with chronic illness?

I can only speak to my experience and my measures of how my body is or is not behaving compared to its previous levels of performance. If your body functions at different levels or your measures for functioning are completely different, it is not my intention to in any way diminish or dismiss your experience.

When I say “I am functioning” I mean that I am getting oxygen.

I have severely impaired diaphragm function which, if sticking to the present course of depreciating 10 percent each year, means I will likely need mechanical help to breathe within the next five years at the latest. As a child I admired the Bionic Woman and, especially in the moments when I struggle to breathe, I am more looking forward to than afraid of this prospect. Some days are significantly easier for me to breathe than others. On good days, I can go up a flight of stairs or walk long distances. On bad days, my body is functioning enough to get oxygen.

When I say “I am functioning” I mean that I am able to eat.

This is not to say I can make myself food. I stock the freezer with meals I made on a good day like a squirrel in autumn, but even on functional days, I am not always able to make it to the microwave. Even on functional days, I may have no appetite or have incredible nausea that requires me to eat small, bland meals. There are spans of time where I may be mentally but not physically aware that I should be eating, and I am merely functioning according to my programming. There are days when I have to rely on others to bring me food because I am utterly unable.

When I say “I am functioning” I mean I can make it to the bathroom without help.

On my worst days with postural orthostatic tachycardia syndrome (POTS), I struggle just to sit up, nevertheless stand, without losing consciousness or control of my body. The days where I am only functioning, I have to mentally prepare myself for the exertion that is walking to the bathroom and then walking back to wherever I was planted. Some days I crawl.

When I say “I am functioning” I mean that I can dress myself.

I can dress myself, but it can take anywhere from 20 minutes to well over an hour. I mentally plot out where the items of clothing are that I need to wear and chart out whether I can cross the room and stand long enough to put on clothing. On my least functional days, I have to dress from the floor. On my very least functional days, I simply wear whatever I had been wearing for however long I end up wearing it.

Up until the conversation that I had with this relative stranger about my ability to function, I had never realized how low I had placed the bar for what I meant when I said I was functioning. For me, functioning does not equate thriving; it is the minimal amount of self-sufficient exertion to survive. For me, functioning does not even bring working part or full-time, taking care of children or pets or other loved ones, or maintaining relationships into the picture.

For me, saying I am only functioning is the loudest cry for help I know.

I grew up minimizing my experiences to take up as little space as possible. I had this warped perception that no one cares if you are sick, only if and when you were expected to get better. That no one wants to hear your complaints, that complaining about symptoms was more akin to crying wolf than needing to have your invisible struggles seen, than needing to be seen. I have been lucky enough to have a well-meaning, supportive family. I have been privileged enough to afford a therapist who understands chronic illness when I was at my least functional.

Most days I am functioning. Over the last year, flares notwithstanding, I have been more than just functioning, I’ve been functioning pretty darn well. I have found my home somewhere in between the realms of functioning and thriving; we could call that place living.

I live with chronic illness every day. I am taking my life one day at a time. I am trying my best. I am optimistic that the days for thriving are just around the corner.

I am not the only one.

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Thinkstock photo by lolostock

Originally published: April 27, 2017
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