10 Things I Wish My Employer Understood About Working With a Chronic Illness


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.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

Lead photo source: Thinkstock Images




When I Told My Boss I Feared Being Weak Because of My Chronic Illness


I never disclosed to my college professors that I live with primary adrenal insufficiency (PAI). Even when it caused me to fail a couple of finals or I had to miss class to have scary medical tests run, I kept it hidden from them. I did not want to single myself out. I didn’t want to appear weak.

But when I started working, I quickly learned I must tell my managers about my PAI. Within the first couple weeks on my new team, I informed my manager. I mentioned how I sometimes suffer from extreme fatigue that can come on suddenly without warning. I told him if I suddenly become illogical, irrational, combative or extremely emotional, those actions aren’t me. They’re warning signs of low cortisol.

I also told him I try to be extremely mindful of how I’m feeling. If I start to feel myself go downhill, I take actions to place myself in the safest environment as quickly as possible. My manager said he trusted me to know my limits and he would respect them. All I need to do is speak up.

In November, we hit a stressful period at work. Around 4 p.m. on a Friday, I knew I needed to go home. I had already worked late two nights that week and began to fade. I grew increasingly frustrated and struggled to understand simple instructions. I hadn’t revealed my PAI to my other coworkers. They didn’t comprehend the importance of my statement that I needed to leave.

My manager walked into the lab. After one look at my face, he asked if I needed to go home. I said yes. By this time I was shaking from low cortisol brought on by extreme exhaustion. As we left the lab together, he said, “It looks like you have already pushed yourself too far, Amber.”

One of the most difficult things about living with this disease is I never know my breaking point until it is too late. I’ll feel somewhat OK and then suddenly, I’ll feel awful. And I won’t even realize I feel awful at first. I just appear extremely combative and irrational.

By this point, I was on the verge of tears. In desperation, I threw my hands up in the air and stated, “I just don’t want to appear weak!” I hurriedly rushed away because I couldn’t stop the tears from flowing. My manager did not immediately chase after me. Instead, he waited a few seconds, then stopped by my desk, asking me to step into his office on my way out. When I entered his office, the first thing he did was apologize. He wanted to make sure he didn’t imply I was weak. I responded with gratitude for his understanding.

I explained to him how fear of appearing weak is a personal demon of mine. I’ve never been healthy. I’ve never been normal. I’ve survived living in this world by comparing myself to those around me and trying to not fall behind. I’m working on growing more confident in who I am as just Amber without comparing myself to others.

He paused before he spoke. And when he spoke, it was with words of encouragement. He stated that every engineering problem I feel I must personally complete doesn’t rest solely on my shoulders. That is part of working on a team. We help each other out and share the load. He pointed out my contribution to the team in terms of completing tasks is completely replaceable. But he didn’t stop there.

“What is irreplaceable, Amber, is you. Do not push yourself to the point of collapse. That helps no one. You need to take care of your health first. You need to do what is best for you. A healthy Amber is a better team contributor. A healthy Amber is better for the entire team.”

I left his office incredibly encouraged, humbled and in tears.

Over the past two years, I’ve actively been working on this. I previously believed it was selfish to admit I didn’t have the strength to complete a task. I would try to muscle through things to the detriment of my own health. But saying I don’t feel well and need to take a break, eat a snack or walk outside of the lab is not a sign of weakness. Setting proper boundaries actually takes an enormous amount of strength.

This may seem harsh, but from a task standpoint, you are completely replaceable at your job. But while you can be replaced in your job, you can’t be replaced as a human. We must protect our health and our spoons. It’s much better to speak up and say, “I need a break” rather than push ourselves to the point of collapse.

It benefits everyone. And it helps us remain Clearly Alive.

Follow this journey on Clearly Alive.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.


Climbing a Mountain Without Using Your Legs Requires One Thing: a Son Who Believes in You


“I strongly believe that everyone has his own mountain to climb,” Luca Galimberti says in the video below.

Galimberti, who has Adrenoleukodystrophy (ALD) and Addison’s disease, literally climbed a mountain in August 2013 — on a cross-country sledge for paraplegic people, using only his arm strength and the help of fellow climbers. He reached a 12,000-foot- high peak of Monte Rosa, the highest mountain in Switzerland. Director Mauro Mancini filmed the climb in the six-minute documentary below.

The feat is, of course, impressive — but the best part of the clip is Galimberti’s close relationship with his son, who never stopped believing in his dad. Make sure you watch through the end, when Galimberti radios his kid to tell him that he overcame his mountain.


Photographer Takes Kids Used to Being in Hospitals and Places them Inside Their Own Drawings


When Shawn Van Daele looks at a child’s drawing, he doesn’t just see crayon marks or colored pencil scribble. He sees a world he can bring to life.

The 37-year-old photographer from Eden Mills, Ontario, has been traveling across Canada and the U.S. meeting children and teens with health conditions and photoshopping them into the dreams they draw up. He’s helped young girls become butterfly fairies and young boys become superheroes. He’s made one little boy a karate master and turned another little girl into a prima ballerina. He appropriately calls his series the “Drawing Hope Project.” Because that’s exactly what his work creates — hope.

“The attention these kids are getting is incredible because each of their causes is so unique and deserves so much attention,” Van Daele told The Mighty in an email. “If it has inspired one person to register as an organ donor, or to donate blood, or support their local children’s hospital or all the numerous foundations that support these kids, then the project has accomplished what I set out for it to do.”

Visit the Drawing Hope Project’s website to view all of Van Daele’s “Little Heroes,” and check out a few fantastical images below.

friendship by christopher robin
Shawn Van Daele

kendal, the ballet queen of broadway

Anniek, the hero of the sand castle

jack, the here of hope street

travis, the watchman

hunder, hero of the deep

avery, the butterfly fairy

david, keeper of the stars

alexandria, queen of candyland

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