I live with primary adrenal insufficiency. For the most part, my disease is completely invisible. You might see me always carrying a bottle of water with me, and I do wear a cortisol pump, but other than those two things, you would have no idea the gland responsible for the stress response in my body is completely dead.
I also work full time in a highly stressful and highly technical field. For the most part, my employer has been understanding and accommodating with respect to my disease. But these are 10 things I wish they better understood.
1. Managing my health is like working another highly demanding full-time job.
During the peak of my disease flare in 2013, I was bouncing back and forth between 14 different specialists with each one running their own set of tests. Each one had their own opinion of what was wrong with me, and sometimes those opinions would conflict. I have to find a way to balance all of that on top of my actual day job. Thankfully, things have slowed down, and I only have to manage four doctors regularly. But I still need to view managing my health as a top priority, so I’m able to successfully complete my actual job.
2. Please don’t make jokes about my special diet.
Calling attention to the food I’m required to eat only further isolates me from the group. Stating things such as “Oh, I want to cut in line!” or “I wish I got my own special box” might seem like innocent small talk, but it’s really not. Do you really want my special food and all the things associated with it? Do you realize the pain I’ll experience if I stray from my diet? Do you not know I’m reminded of the fact that I’m different every single day? I don’t need you to further point it out to me. I don’t draw attention to my food, and I kindly request that you don’t, either.
3. Don’t make jokes about work ethic or “working hard.”
I had a manager who once joked about his work ethic. He said they should keep loading him up with more and more work until they found him collapsed and convulsing in his office. I kindly approached him and told him not to make jokes like that. What seemed like a highly unrealistic scenario for him is actually a very legitimate fear of mine. Push me too far with this disease and you will find me collapsed and convulsing.
4. I don’t know when or how my disease will flare up.
You ask me how long a specific task will take but then grow frustrated with me when I’m unable to give an answer. Please understand I don’t know when or how my disease will flare up. One day, I might be able to be super productive and knock out everything on my to-do list in record time. The next day, I might be unable to coherently state my name, and you will find me hiding in my cubicle.
I do everything in my power to manage my disease in such a way that those bad days are minimized, but forcing me to arbitrarily pick a task completion date only adds unnecessary stress to my life.
5. I’m working as fast as I can.
And yes, that speed varies. Just because I was able to accomplish 10 things yesterday might not mean I’m able to make the same amount of progress today. I understand this unpredictability is frustrating, but honestly, welcome to the life of someone chronically diseased. Know that I’m giving my best, and I apologize if my best is too slow for the project. If you try to pressure me into working faster, that only increases my stress load, which only slows me down further. Please trust me and trust my pace.
6. Don’t request I give 100 percent to a project.
Please realize my 100 percent costs a lot more than your 100 percent because of my disease. A late-night conference call on a Wednesday night for me might spiral out of control into an ER run on Saturday morning. For another team member, it might just make them tired. I’m willing to work to get the job done, but please do be considerate of the high personal cost associated with your requests. Is the price associated with the request truly worth it?
7. Please realize I struggle in meetings.
I promise you I’m not trying to be combative or disrespectful. I feel physically ill when I’m trapped in a room with more than 10 people for a significant amount of time. If my input is actually needed, I’ll do my best to manage my disease in such a way so that I can handle the meeting. But so often, we get side-tracked on off-topic discussions. I’m then forced to spend a significant amount of time in my cubicle attempting to recover in silence and not allow my disease to flare worse.
8. Respect my time.
It takes a lot of work and effort to manage this invisible disease so I can successfully function in the working environment. Scheduling appointments with me allows me to prepare so I’m able to effectively communicate with you. I absolutely dread large meetings, but appointments on my calendar with one or two critical people are much easier for me to handle.
9. Understand how I best communicate.
Some days it’s harder to grasp certain concepts, so I have to write everything down and share my reports with you. It’s so much easier for me on those days if you just read what I’ve sent instead of asking me in person. I’m not trying to be rude, but if you ask me what I did, it’s highly likely I won’t remember. I can read what I wrote down. And you can read what I wrote down. This is my safety net, and how I’m actually able to still accomplish so much while working with a chronic disease.
10. I know. I don’t look sick.
In your day-to-day interactions with me, it’s easy to forget I’m actually living with a chronic and potentially life-threatening disease. I purposefully live my life in such a way so you just see the smiling, laughing and slightly sarcastic engineer. I don’t want my entire identity to be wrapped up in my disease. However, I also recognize a large portion of my identity is heavily influenced by my disease. Over the years, I have learned how to best work with it so I can successfully work with you as well.
I understand you might forget I’m chronically ill, but please realize that I never do. If you can remember these 10 things, I’m able to be a better employee and you are able to be a better employer.
Follow this journey on Clearly Alive.
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