One of the things I was most afraid of when I was first diagnosed with Mastocytosis was how my life would change. I worried if I would be able to live on my own, if my life expectancy and quality of life would decrease and whether I would be able to work and support myself.  

This blog post is about an understanding employer who made a significant impact in my life.  

Workplace article

Prior to becoming really sick I was living on my own, supporting and taking care of myself. The idea that I would have to change that frightened me. As my symptoms worsened, I took leave from work to focus on my health and find some answers. Thankfully, my boyfriend and my family were incredibly supportive, took care of me and helped me financially. But I didn’t want to burden them.

After a while, I returned to my job but it was very difficult for me to manage. No accommodations were made to mitigate my health concerns so my days involved many hours of vomiting in the washroom and taking a daily lunchtime nap in the breakroom just so I could make it through the day. I was under weight, exhausted and sicker than I had ever been. After some time, I realized that working in a high stress job no longer fit my life. I quit this job so I could rest and heal.

When I was ready to go back to work, I found a lower stress job that still paid well. By this time, I had moved in with my boyfriend and he offered me emotional and financial support so I could find a more suitable career. He and I were partners so I no longer felt I was burdening him with my issues and I was more willing to accept his help. At the same time, I was determined to pull my own weight!

When I started my new job I didn’t tell anyone about my illness. I felt it was my business and I could manage it. And I was right for about one month, until I had my first bad reaction. Thankfully it happened at home, but it resulted in needing to take a few days off work to rest. I knew I would have to explain what was going on because this certainly would not be the last time my illness affected my ability to work. I explained Mastocytosis to my boss; how it affects my life and how it could affect my work. She was very understanding and empathetic. She made me feel comfortable and safe and I realized I should have told her sooner.

My boss, understanding the potential dangers of the disease, implemented a plan to ensure I was safe.

  • She learned how to use an EpiPen. To this day she has a sticky note at her desk that reads “blue to the sky orange to the thigh” just in case she is overwhelmed in the moment and forgets.
  • I was to ensure I always kept an easily accessible EpiPen at my desk and backups in my bag.
  • She found out who in the office was trained in first aid. She had our Safety department meet with them to ensure they knew how to use an EpiPen.
  • With my permission, she disclosed my illness and explained what a reaction often looks like for me.
  • She ensured my office was visible to other employees so if I was having a reaction it would be more easily spotted.
  • She learned my triggers and encouraged me to avoid them. When there was smoke from the forest fires in BC, she immediately suggested I stay home so I was safe and away from the smoke. When it is -40C in the winter, she makes sure I have a safe way to get to work without being in the cold. If that’s not possible, she suggests I stay home. My safety is more important to her than anything else.

Recently, our company moved to a larger office. I am the receptionist and in the new floor plan my office would be more secluded. Prior to moving, the Safety department developed a plan to install an emergency buzzer at the front desk. If I feel an emergency reaction coming on I am to push this buzzer to alert the first aid team. Thankfully, this plan has not been needed yet. I have always been able to recognize that a reaction is beginning and alert my boss quietly, without disrupting the entire office.

I am so grateful to work in a place that accommodates my health needs and ensures I feel safe. These accommodations have allowed me to work full-time, contribute financially to our household and maintain a high level of independence, which is important to me.