Overcoming the negativity of anaphylaxis in the workplace

Written by a Victorian Allergy & Anaphylaxis Australia subscriber, aged 28 years

Let’s call it out! Anaphylaxis can be challenging and when there is a lack of understanding and/support for people with anaphylaxis (and their families), challenging becomes very frustrating and does take a mental toll.

Over my professional career, I’ve had little to no issues managing my smell sensitive anaphylaxis in the workplace. Yes, you read that right, my anaphylaxis does trigger if I am over exposed to the smell of chlorine. It’s a very rare allergy and unlike most food allergy the smell of chlorine triggers anaphylaxis. Obviously, this presents an increased challenge. It’s not something that I put on my application or resume, but on induction day, or when I changed business units at work recently, a simple chat to my colleagues and manager would equal effective arrangements to prevent exposure and support in the event of worst case. I don’t hide my anaphylaxis at work, because I feel safer if people are aware, plus I find that they feel more comfortable and willing to support if they know from the beginning.

But every now and then you get the curve balls that negatively impact you and your colleagues. If you’ve ever seen a virus spread, all it takes is one person to cough and the next thing you know everyone is sick. For me, in March 2018 my job role changed, which also meant a change in work location. I had a chat with my new manager about my allergy and all should have been okay because there was 6 weeks before I transitioned to the new worksite. Previously, the same organization (and previous employees, had sorted it in a day and at longest a week). However, this was far from the case for this new site. Six weeks went by and although bits and pieces were occurring, no arrangements were in place and my manager and I continued to adapt so that I could still achieve my work. Fast forward seven months to October-November 2018, the decision was made that until further notice, I was no longer okay to work in my old worksite (because the paperwork wasn’t done), instead I had to work from my home and not attend any meetings until a work health plan was developed. This was my tipping point! I don’t cry often at work, but packing up my desk that day, for what was supposed to only be a week or two but turned into seven weeks, was extremely hard.

That one person’s decision, which didn’t involve consulting with me first, spread like a virus through my life, my families, friends and trusted colleagues that found out what was happening.

Now when we are the person at the centre of all this, I believe we have every right to feel angry, frustrated, isolated, misunderstood and probably many other emotions. We are the subject matter experts on controlling and managing our anaphylaxis; and when we have done it our whole professional career, we know what works. Yet when you are left out of discussions and they try to squeeze you into a proforma that clearly doesn’t work, those feelings intensify, and it mentally takes its toll. My doctor put me on stress leave and referred me to a psychologist.

BUT … what’s important here is what we do next. If all it takes was one person to start the negativity, then all it takes is one person to start positivity. As hard as it sounds, we need to be that positivity, because when people see the person at the heart of the challenge being resilient and positive, that vibe will spread with bullet like speed!

At this point you might be thinking, easy for you to say, but remember, I’ve had to learn this the hard way, and it’s my hope that the following points help you to overcome similar challenges and make a huge difference in your situation.

1. Be honest with yourself. It’s hard to be honest but professional at work when you are facing a personal challenge. So, when you are not at work, for me it was the minute I left the building, it’s important to be honest with yourself. Knowing how you feel is the best way to start addressing it. I made the mistake of thinking I had to be the person that always had it together, at work and at home, but that was an unsustainable approach.
2. Get the right people around you. At work, my manager was understanding, but when you want to have that rant and let your professional guard down because things are hard, you need good friends and family around you that can hear you out. Basically, don’t do this alone, but don’t involve the whole zoo. For me, I had 3 people that knew the ins and out and were and are always there for me.
3. Boundaries. The organisation I work for is large, meaning that the HR team has a few people in it. Initially, I was receiving calls and emails from many people within the HR team. It wasn’t long before I felt overwhelmed and frustrated by this. Hence, a boundary was set, and HR now sends all communication to my manager and he is the only one that can contact me directly about managing my anaphylaxis in the workplace.
4. Back yourself and take the lead. When this all started, I let work know how I’ve made this work in other places and the extensive knowledge I have on the topic of risk and planning. But as time passed, I needed to take a more proactive approach. They struggled to link what I was saying to what it could possibly look like on paper for them. Hence, I took the lead and wrote a plan out, which is now the plan that has helped me return to my ‘old office’, albeit not the new worksite where my business unit is. But it is paving the way to address the new site and any others, as I move around a bit for work.
5. Seek out and engage an advocate. Having someone in your corner that understands both anaphylaxis and workplace requirements is a massive help, especially if you are not feeling 100% confident to take the lead. For me, my manager was fantastic! He stands in the gap and advocates for my rights and helps HR to understand. Allergy & Anaphylaxis Australia also offered to assist as needed, which was great.
6. Make no assumptions and communicate regularly. In my case an assumption was made by HR that my manager was writing the health plan, but my manager assumed HR was writing it; clear problem there. From the outset, be clear on who is developing what and by when. ‘No assumptions’ also includes; others knowing what anaphylaxis is, how impactful it is and how they can help. It sounds crazy, but I was frequently asked ‘when you have anaphylaxis, how does it affect your work? What percentage of your work can’t you do?’ This just highlighted they didn’t understand what it is.
7. Have a flexible attitude. Yes, these situations are hard, but unless we find the ‘brighter’ moments in our day, the negativity will take over and that’s not good. For me, this involved reminding myself that I had done all that I could and that there was more to like then the challenges of work.
8. Get perspective on what is ‘As far as reasonably practicable/possible’. What can be hard at times is the scale of what is reasonable. Having been around workplaces and other situations I had heard unrealistic requests for adjustments such as banning foods, perfumes and chemicals completely. The ‘as far as reasonably practical/possible’ statement is throughout legislation and workplace agreements, but it is very subjective and when I was overwhelmed and emotional at times, being able to determine what was reasonable was challenging, because for a workplace, reasonable is about you and all others involved there. That’s why it’s important to ask others perspectives. A few calls to A&AA, a chat with the doctor and friend and an email for advice from another trusted person enabled me to determine what was reasonable and what was not.
9. Be reasonable. Everyone needs to take a reasonable approach to this and everyone needs to be considered when new arrangements are made, that includes you, me and colleagues. No one can 100% guarantee that an allergen will not end up in your workplace, but everyone can take reasonable steps to prevent it and be prepared if worst comes to worst. For me, my plan was eventually developed with bigger picture thinking so that it effectively supported me and my work. For example, there is a risk that if I work alone there could be a delay in receiving medical assistance. Instead of saying I can’t work alone, which has issues if I drive for work or the others pop down the street, we put some actions in place like text alerts in my phone and check-ins when travelling solo.

These are nine big picture items to help guide and support you through. People are more likely to support change if they can understand and see it as reasonable and realistic. But if you’re looking more for the ‘how to sort it at work’ steps, then keeping in mind the points above here are the how to steps.

1. Talk with your manager as soon as possible.
2. Develop a plan of attack. What you need to do, when, how and who is involved in achieving it.
3. If anaphylaxis understanding is low, direct them to the Allergy & Anaphylaxis Australia website and/or seek assistance in an awareness class (they do exist).
4. Be the positive educator in your workplace. Don’t just bring the problem, bring a solution. We are the ones best equipped to know how to manage our anaphylaxis.

As I’m sure you have figured out, I’ve been on an incredibly challenging journey, one that is not yet over as I am still working with my manager and HR to make my ‘new worksite’ the one I was supposed to start in in March 2018 safe. But when you love your job, the impact it has into the wider community and you know your EpiPen® is your lifeline, we simply must work together to adapt and overcome obstacles, keeping everyone’s health and wellbeing in mind!