As someone with a stress-triggered autoimmune disease, it's safe to say that stress is a dangerous thing for me, but a lot of people don't understand that. I understand that because my disability is invisible, it can be hard for people to come to terms with the fact that my body can be so limiting. Naturally, because it is difficult to reconcile the perceived image of health with the story of someone who has dangerous health problems, people with chronic illness are often regarded with suspicion by others when they say they need accommodations and flexibility.
It's a persistent fear that asking for flexibility and accommodations at work due to stress-triggered symptoms will come across as entitlement or laziness. Even people who understand that a disability accommodation is necessary might question them. Stress affects everyone negatively. Why should you get special treatment? However, we aren't asking for a handout, but instead, a level playing field that allows us to be as productive as others.
It would help if others understood how stress affects a person with a chronic illness. I can't speak for everyone, because symptoms vary across diseases and individuals, but I can share my story. The most important thing to understand is this: While my mind is (for the most part) composed and able to handle a significant amount of stress, my body does not move at the same pace. I can't control the mechanisms within my body that decide that stressful days and situations should cause bodily inflammation, just as I can't control the fact that this unnecessary inflammation is happening in the first place.
I am not privy to the spontaneity that is associated with being a young person. I divide my life into two categories: my medical life and the rest of my life. My medical life is full of as much spontaneity as I can take: a spontaneous stay in the hospital because an apple gave me an intestinal blockage, a surprise infection that showed up one morning, a bad day of hip pain. To keep my body stable, I try to keep my life stable by scheduling and planning as much as possible. A trip will be planned so it doesn't interfere with an infusion. I try to have short commutes because I'm drained of energy more easily, even in remission. For two months last year, I couldn't even leave town because of home nurse visits for PICC line maintenance. By managing the rest of my life, my medical life can remain more stable and stress can be minimized. An increase in stress inevitably increases the interference of medical problems in the rest of my life.
When something throws a wrench into the plans in the rest of my life, my medical life is affected. At work, I was brought on board the very first day and blindsided by the news that my position would be changing, but I wasn't sure to what, or to where. It wasn't the company's fault, and it was an unavoidable but rare consequence of the business they ran. One of the main options put forth to amend this predicament was to offer me a different, unfamiliar role with a location that would double my commute. Due to concerns about disclosing disability, I was hesitant to explain to them how this could affect me. Meanwhile, my brain was understanding of the situation and cooperative. My body, however, wasn't. A week of a Crohn's flare, including nightly pain and runs to the bathroom, difficulty eating, nausea, and shivering ensued. My mind was telling me to manage the stress and deal with the ambiguity of my situation and possible life changes, but my body wasn't listening.
An "able" person might see what I go through as a reason not to hire me. Am I not a liability to a business? I can't manage stress as easily and respond as effectively to curveball situations.
This isn't true.
Sure, my body can't properly handle being shocked, and I need more time to schedule things out so that I can take care of myself. However, the ability to manage my tumultuous medical life while still enjoying and thriving in the rest of my life is a skill that I have developed over years, and it has given me resilience and adaptability. I don't shut down when my medical life throws something new at me, I work around it. Maybe I have to schedule around more doctors' appointments than other people. Maybe I have a flare and have to work from home or make up hours the next day. And while my body isn't the best at handling this, my mind is. I'm good at working through challenges, and not all challenges and stress are negative. I don't like Crohn's symptoms and doctor's appointments, but I love challenges at work. New and interesting situations that make me think are invigorating, and I can use the adaptability I have learned over years to effectively address those scenarios.
Why are flexibility and accommodation justified for people with chronic illness? Because we are just as able to contribute as everybody else, but we do it in a unique way. Work should be measured not by the number of hours you sit at a desk, but by the way you use those hours. A worker's loyalty shouldn't be a one-way street of performing overtime and enduring workplace changes, because the employer needs to empathize with a situation and accommodate legitimate needs without resentment. Work can be accomplished just as thoroughly from home, the infusion center, and the hospital when necessary.
But most importantly, others should not resent the fact that people with chronic illness are affected by stress differently. Chronic illness isn't a choice, and you can't just cut the afflicted people off from society. Understand that we need to approach stress differently by scheduling out our lives so that we can manage the day-to-day fluctuations in our health. In return, we will contribute not only our individual talents and skills, but also the benefits of heightened resilience and determination that we have developed from managing our conditions.