Sunday, January 18, 2015

The Wisdom of a Manager

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 did not want to appear weak.

I quickly learned that I must disclose to my managers 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 that those actions are not me. Those are warning signs of low cortisol.

I also told him that I try to be extremely mindful of how I am feeling. If I start to feel myself go downhill, I take actions to place myself into the safest environment as quickly as possible. My manager stated that 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 4pm on a Friday, I knew I needed to go home. I had already worked late two nights that week and began to fade. I started to grow increasingly frustrated and was struggling to understand simple instructions. I had not revealed my PAI to my coworkers. They did not 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 mentioned "It looks like you have already pushed yourself too far, Amber."

One of the most difficult things about living with this disease is that I never know my breaking point until it is too late. I will be feeling somewhat ok and then suddenly I will be feeling awful. And I won't even realize that I'm feeling 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 as I could not stop the tears from flowing. My manager did not immediately chase after me. Instead, he waited a few seconds and then stopped by my cube 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 that he did not imply I was weak. I responded my gratefulness that he has been so incredibly understanding.

I explained to him how fear of appearing weak is a personal demon of mine. I have never been healthy. I have never been normal. I have survived living in this world by comparing myself to those around me and trying to not fall behind. I am 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 words of encouragement. He stated that every engineering problem I feel I must personally complete does not 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 that my contribution to the team in terms of completing tasks is completely replaceable. But he did not 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 have actively been working on this. I previously held the belief it was selfish to admit that I did not have the strength to complete a task. I would try to muscle through things to the detriment of my own health. The verbalization that I do not 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 (If you think you are not, reality check: you are).

While you can be replaced in your job, you can not be replaced as a human. We must protect our health and our spoons. It is much better to speak up and say, "I need a break" rather than push ourselves to the point of collapse.

It benefits everyone.

And helps us remain Clearly Alive.


  1. Wow ... awesome boss!

    And for the record, I have ALWAYS thought of you as one of the strongest people I know. :)

    1. Thank you Grace :)

      Man, I wish we lived closer!

  2. I wish I had amazing bosses like you when I was working! I was SO scared to tell my boss that I was being admitted to the hospital that I waited an hour to call him up because I was so fearful of his reaction. My fears were confirmed, he said the worst things possible, commented how inconvenient it was and proceeded to pull a guilt trip. I had to put the phone down as I was breaking down in tears, shaking from frustration and pain, and when I put phone back up to my ear, he was still going off of me. I swallowed the lump in my throat and shakily responded "I'm sorry my health is inconvenient for you and the business, but I can't do anything else for you until I get better." It was my very first hospitalization, my first Addisonian Crisis(but I didn't know that at the time, we thought it was an ulcer and a really bad migraine--I lost 50 pounds in 3weeks and had the SAME migraine for over seven months at that time) and I was in the hospital for over two and a half weeks. My bosses were emailing and calling me everyday I was in the hospital, leaving nasty remarks in the emails and still expected me to continue to work from my hospital bed, which I did until my doctor saw what was going on and had my parents take my laptop home so I wouldn't be able to work.

    I am currently too ill to be able to work. I miss the days I used to be self sufficient and earn my paycheck, working hard at my job and feeling good about being independent. But man, if I ever am able to work again, I will never ever work for employers that make me afraid to tell them I am ill and need to be hospitalized. No one should ever go off on you when you're being admitted to the hospital, like it's all in my control whether I get hospitalized and my body fails me. :/

    My Addisons has gotten so out of control that I am in a wheelchair and bedridden. I don't even recognize my life! This is not how I thought my life would look as a 28 year old woman, forced to move back with the parents because my parents are the best caretakers I could ever ask for, and I can't do basic things for myself anymore.

    In September I experienced my scariest crisis--My Mom found me in my bed pale and blue, my body was shutting down and my respiratory system included. My Mom called the EMTs and they spent 45 minutes trying to stabilize me before they could drive anywhere. The EMT's thought I was overdosing on painkillers because Addisonian Crises are not common. They ignored my Mother and her telling them how I needed SoluCortef ASAP. They ignored her and my medical history, my medical is bracelet was on my nightstand bc it hurt to have anything on my body that morning (Allodynia, another lovely demon I have to live life with).
    When I finally got taken to the ER, I was still completely unresponsive and the doctors told my mom that if I wake up, I could be waking up with brain damage, and not be myself anymore. I was out for eight hours. During those eight hours, the incompetent EMTs and doctors gambled with my life by not listening to my primary caretaker and administering SoluCortef ASAP. They were more concerned with detoxing than SoluCortef and my extensive medical history.
    The ER doc finally Googled Addisons Disease, Adrenal Crises, etc. and realized what HUGE mistakes they were making by treating me as an OD patient.

    Thankfully I am alive and I did not wake up with any brain damage. It's so scary though to go through all that and be so close to death. Every day since that happened, I am afraid to do anything! This disease is so unpredictable and scary, it's completely hijacked my life and not nearly enough doctors know enough about the endocrine system. I don't trust doctors!! An educated patient is the best kind of patient to be, even though the docs don't like it.

    I really am happy for you that you have employers who value you and your health. I love reading your articles, you're such an inspiration.

    1. Oh Laura, I am so sorry :(

      You had quite the roller coaster of a ride! Between horrible bosses and then that adventure in September. You're what, four months post your super scary Adrenal Crisis? I couldn't even speak about mine for several months and I definitely developed PTSD symptoms after being so mistreated.

      The people that we are supposed to trust with our lives in medical emergencies almost killed us. That's very traumatic and takes a significant amount of time to recover from. We might bounce back physically, but both emotionally and mentally, it takes much longer.

      Don't be afraid to seek out additional help or counseling. I know I had to. I'm over two years post my "Nightmare" and just now am I getting to the point where I can see ambulances and they not trigger PTSD flashbacks.

      I can promise you that it will get better as we continue to fight each and every day to remain Clearly Alive <3

    2. You are so sweet to the the time to read my long book I wrote (lol) and for also taking the time to reach out to me to encourage me and lift my spirits. You truly are a strong woman and an inspiration in so many ways, darling!! Keep remaining clearly alive and sharing your posts, you're making differences in so many peoples' lives-- more than you'll ever know. Xo


Thank you for your comment. It will be displayed once approved by a moderator.