Discussing and Disclosing AS At Work
Last updated: September 2023
You’re sitting at your desk with a heat pad plugged in, on high, and strapped to your lower back. A co-worker walks by, notices your setup, and stops to ask if you’re ok. How do you respond?
A) Tell them your back is bothering you, risking the classic “oh, my back bothers me sometimes too” response,
B) Go into detail about the autoimmune disease you have that can flare at any time and could lead to full spinal fusion along with a bunch of other scary complications, likely getting the uncomfortable “oh...wow, I’m so sorry” with a face that screams “I don’t know how else to respond to this!” or,
C) Brush it off, say you’re fine, and all move on with your day.
Over the past 5 years, advocating and spreading awareness about chronic illness has become a huge part of my life. I thought that I would confidently be able to field questions from my co-workers, but surprisingly continue to find myself unsure how much I should disclose at work.
As much as I try to hide the symptoms of my ankylosing spondylitis, the hip pain, back spasms, fatigue, and generally difficult days sometimes make it impossible. I'm fortunate to have a group of co-workers who notice when I'm a little off and ask if I'm ok, but even working with a group of people that I know are compassionate and supportive, I can never seem to shake the fear of facing some sort of discrimination or retaliation based on the needs of my illness.
I'm always torn between wanting to advocate and bring awareness to AS, and wanting to do everything in my power to protect myself from potential discrimination. When faced with the above scenario, my response these days varies between all three.
This or That
At work, I chose to
I pick and choose my answer based on the person
If a co-worker I know and am at least fairly comfortable with asks, I’m a willing and open book. I share as much as I feel is appropriate at the moment, and I’m not afraid to navigate a little bit of awkwardness when people don’t know how to respond.
If someone I don’t know asks, I steer directly to option C and let them move on with their day in ignorant bliss. Is that helpful to raising awareness about AS? Nope. But I only have so much bandwidth for these types of conversations and snap decisions.
If a manager or superior asks, I’m still very hesitant. What is the intent behind their question? Do they have motivation to help me, or might the “inconveniences” of my health issues make them look at me differently? Might I start to be considered “difficult?”
On the other hand, could disclosing help to better manage workplace expectations? Could they provide me accommodations that would help me do my job better? This is the most difficult scenario, and the ping-pong ball bouncing around in my brain as I answer these questions also makes it the most stressful.
Getting more comfortable being open
Ultimately, I have decided that the pros outweigh the cons, and I have begun to disclose my AS to managers and superiors at work. I still feel the risks, and sometimes question my decisions and conversation tactics, but my hope is that by braving the fear and discomfort I can continue to raise awareness, advocate for myself, and start to change the stigma that disabilities and illnesses make for menial employees.
Have you disclosed your illness to co-workers or managers before? What would you tell someone struggling with this decision?
Do you notice worsening flares in colder weather?