When Chronic Illness Has You “Playing Scared”

My new specialist took me seriously and gave me a new framework for navigating my health.

Last week I had my first-ever appointment with a rheumatologist. My rheumatologist. That part still feels incredibly foreign to me, that I am now the sort of person who needs their own rheumatologist. Every day I fight the urge to let my chronic illness make me feel shameful, indecorous — “other.” It’s a fight I lose more often than not.

Anyone who finds themselves newly disabled can tell you that newfound disability comes with a staggering amount of grief; grief for the person you were before you got sick and the person you could have been without that sickness, especially when you are young. We spent our entire childhoods growing up and hearing that we could be and do anything we put our minds to if only we worked hard enough. We envisioned futures for ourselves that never included a seemingly sudden inability to walk up a flight of stairs without our legs buckling beneath us or researching affordable mobility aids in our twenties. No one teaches you how to cope with the possibility that the American Dream you were promised as a child wasn’t designed for you.

And so after years of worsening chronic pain and fatigue, I made the dreaded new patient appointment. I was referred to this particular rheumatologist by my primary care physician, a particularly callous woman in her early fifties that made me feel as though I were about three inches tall. When I finally managed to get the words out, the ones that have been resting uneasily in the pit of my stomach for months, they were met with nothing but dismissal and hostility. I don’t think she looked me in the eye once. Which to be honest, I didn’t mind much. You see, I’m autistic, and in addition to disliking eye-contact with strangers, I have enormous difficulty advocating for myself. I tense up and shut down, have trouble remembering crucial information and organizing my thoughts, and have a general tendency to let others talk over and decide things for me. I never want to be a bother, or make a fuss, or be “too much,” so I never receive the care I need. This time, however, I was determined to be heard.

Before my appointment, I took to Twitter to ask the chronic illness/disability community for some much needed advice. The overwhelmingly prominent suggestion was to write down a list of my symptoms, objectives, and questions to give to my doctor. Both so I wouldn’t forget anything crucial I needed to tell them and to serve as a guide to keep me grounded during the appointment. The other main suggestion was to take someone with me, preferably a man (thanks, patriarchy), to serve as an advocate and a witness. Unfortunately that wasn’t in the cards for me, so I went to the appointment alone, the piece of paper that felt like a lifeline clutched in my hand.

After reading account after account from my fellow spoonies about their series of dismissive and unhelpful doctors as well as my own, what I experienced at that first appointment with my rheumatologist took me by complete and utter surprise. The kind-eyed physician with messy hair and a CDC-compliant face mask read over my haphazardly thrown together plea for care:

“Hi. I’m autistic and have trouble advocating for myself and expressing my needs. I made this list of the problems I have been experiencing for you. I’ve been having these problems for years, but they’ve steadily increased over the last year/six months to the point where my quality of life has been severely impacted. I’m in pain and exhausted all of the time and I need someone to listen. [List of symptoms]. These problems are persistent and severe enough to interfere with my daily life. I’ve lost three jobs and dropped out of school. I’ve nearly had accidents in bed from being in too much pain to get to the bathroom. I’ve had to have my partner carry me up the stairs/out of public places when my legs hurt too much to walk. I just want to know what’s wrong with me. I will do my best to answer any questions you may have. Thank you for listening and trying to help.”

He folded the paper back up carefully and looked up at me, the crinkles by his eyes letting me know that he was smiling, though sadly, and he said the four words I’d been longing to hear for years: “I see. I understand.” We talked for about an hour about my life and symptoms, he spoke softly and directly and was patient when I struggled to get up from my chair to show him how I walked.

Then he asked me a question I was thoroughly unprepared for: “Do you play any sports?” I shook my head and chuckled softly. “No,” I said. “Definitely no.” He smiled. “I thought not,” he said. “Do you watch any?” I told him I was fond of soccer, or rather European football, Liverpool FC in particular. This seemed to please my good-humored doctor, who then proceeded to dive metaphor-first into his assessment of my condition.

“You know when you’re watching a match,” he began. “And even if Liverpool is down one-to-nil, you can tell by the way that they’re playing that they’re going to come back and win the match?” I nodded. “And oppositely, even if the other team is up, you can tell by the way that they’re playing that they aren’t going to keep the lead. Their heart isn’t in it. They’re playing scared.” I nodded again, more tentatively this time, as I felt the pressure behind my eyes building. “This is you,” my doctor said. “You’re playing scared. I don’t know what happened to you that has made you this way, but you’re clearly a bright young woman who has experienced a great deal of trauma. You’re playing the game as if you are destined to lose. You’re playing scared.”

I was speechless as the tears finally left my eyes. I looked at my feet and tried to suppress the meltdown I could sense was coming. My doctor spoke again. “You need to start playing as if you’re going to win. You need to be Liverpool.”

Easier said than done, doc, I thought. But I nodded and smiled politely, as I knew that was what was expected of me. Still, his words had shaken me. He was right, I was playing scared. I had bitterly resigned myself to a life of pain and exhaustion, a life I may very well continue to lead as long as I continue to exist on this planet, and it has been that fear and despair that has arguably weighed me down even more than my physical illness. As I said before, there is a staggering amount of grief that comes with chronic illness and disability. Chronically ill and disabled folks are more likely to experience mental health problems throughout their lives, but especially during the “adjustment period” after acquiring said illness or disability.

It’s difficult not to “play scared” after years of capitalist conditioning has taught us that our worth is measured by our productivity. Where does our value lie if we are no longer able to contribute to society in the way we’re expected to?

For myself, I’m still unsure. While I am of the belief that all human beings are inherently valuable, I’m also stubbornly insistent in my opinion that this belief somehow doesn’t apply to me. That I am forever the pathetically useless exception who doesn’t deserve to be valued or loved exactly as I am, rather than the mythical idealized version of myself that I wish I could be. I need to let her go. For better or for worse, this is who I am now. This is the body I have been given, and it’s no less valuable on the days when I can’t make it up stairs on my own.

As my rheumatologist and I parted ways, he left me with a bittersweet assurance. “I can’t promise that I’ll be able to help you, but I am certainly going to try.”

I think it’s only fair that I try too.

No End In Sight is a place to read and share stories about chronic illness in our own voices. You can also listen to these types of stories on the No End In Sight Podcast.

Do you want to share your own story about chronic illness? Here’s everything you need to know.

Previously on No End In Sight — My Retreat To Romance