Working with any rare disease presents many challenges, with a visible condition, like my vascular malformation, different workplaces have different hurdles to overcome.
I have been lucky enough to have experience working in both public-facing jobs and in more office-typical placements. For brevity, I will discuss challenges in public-facing jobs in this blog and address challenges I have faced in more office-typical placements next month.
Unsurprisingly, in public-facing professions, such as customer service, one of the largest challenges is the public’s inquisitive nature. The fact that you may be working with hundreds of different people every day, all of who may have questions about your condition, can be exhausting. All my life, I have lived with the strong belief that questions are always an opportunity to educate people about CMTC. I believe every person I educate about CMTC, is another person who may help someone get a diagnosis one day. However, even with this strong, core belief, if you have a couple hundred people every day ask “What’s wrong with your arm?”, “You are having an allergic reaction!”, or any other variant of drawing attention to your face or arms it can get wearing.
I find having canned answers that fit the length of time you have with each person is the least exhausting way through these interactions. For example, “You are having an allergic reaction!” usually gets the quick response, “Oh thanks for the concern, but no, I have a rare disease.” If I have more time, I mention the rare disease is a vascular malformation, called CMTC, which makes the blood vessels in my arm more visible than in the average person. I find this answers most questions fairly succinctly, allowing me to continue with my work and conclude the conversation pleasantly.
Most interactions are genuine curiosity or concern and with a couple of engaging comments, the topic is closed. However, anyone who has worked with the public knows there can be a cruel streak. I find it is important to remember this does not just exist for people with a visible rare disease, some people just want to create a scene or a fuss and will lash out to create attention. The challenge when you have a visible disease, like CMTC, is that it gives them something to focus that cruelty on. This feels awful when it happens, there is no other way to put it, but the best advice I can give is for you to remember there was likely nothing you could have done differently to prevent the situation, some people are just going to be rude, especially in jobs like cashier, server, bartender, etc. The toughest part in these situations is to determine in the first few seconds of the interactions, whether they are someone who can be educated or someone who cannot. This split-second decision is critical to your approach and, unfortunately, comes with practice and time. If you think they may be receptive to an educational comment, then use your response like you would with someone who comes up to you in concern, I like to add a small correction of tone. For example, “What’s wrong with your arm?” snapped by an adult is usually addressed with a simple “Nothing, but I do have a rare blood vessel disorder called CMTC if that is what you are referring to.”
If they are someone you feel cannot be educated or you don’t feel like being an educational tool at that moment then another path must be chosen. First, never feel like your body or experience is an educational model for all to use and interact with. This is your life, if you don’t want to have a conversation with a bully today, then don’t, you owe no one an explanation for living your life. Second, these conversations are the most challenging, and honestly, work the best, when you have co-workers or friends who can back you up. One of my favourite ways of dealing with rude members of the public in high-frequency positions is to simply ignore them, they can ask, usually demand, to know why I look different, and I do not need to respond. When I am tired or have had to navigate a number of these interactions in a day, I do choose this very valid response of simply moving on in the conversation. If you are in a situation, such as a server, where you cannot just ignore and walk away, or send them away, where you have to address the rude comment, then you need to find something you are comfortable saying and is work-appropriate. In my opinion, thinking of non-work-appropriate options also helps reduce stress. I use short statements in closed tones to end conversations, including, “I have a rare disease.”, “A treatment that is saving my eyesight.”, or simply “None of your business.” They can be similar to my educational statements, but the phraseology and curt tone of voice used in these encounters are designed to end the conversation on my terms. These are never fun encounters, but if you can feel the build-up to one of these conversations occurring ask a trusted co-worker, supervisor, or friend to be on hand to provide strong support.
But most importantly remember you are in charge of your condition and how much education you want to provide and that can change at any time, including, in the middle of an interaction, you owe no one any more information about your condition than you are willing to share. In public-facing careers, I find support in your work community is one of the best strengths you can provide yourself as just by the nature of the job you are going to feel more on display than you may in other professions, but they can still be incredibly rewarding. I love working in a pharmacy and helping new patients navigate their conditions and the challenges that come with insurance, knowing my struggles now helps them have a smoother path always brings me joy.
