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Blog Katie Allen April 2024

 In Blog Katie Allen

Blog Katie Allen April 2024

Personal experiences – Katie Allen (Canada)

This time I wanted to address an interesting aspect of living with a visual difference that I feel doesn’t get discussed often enough.

The reality for many people who have CMTC or other vascular birthmarks on visible locations, especially the face, is the assumption many people make that a physical difference means a mental impact. When I was younger and the marks on my face were always visible, I didn’t always realize why I was receiving certain behaviours from strangers. However, as I have grown up and I have a vastly different set of marks depending on regular days and post-treatment days I can compare how I am treated differently. When my marks are quite dark and vision is impaired in one eye, I find people tend to speak slower and use more hand gestures to describe what they need. They also repeatedly clarify what they need or want, often talking to others around me rather than to me. As the marks clear up this behaviour disappears, or at least dissipates, and interactions return to baseline.

I find this treatment one of the most exhausting parts of my condition, the assumption that, just because you look different, you also have mental competency struggles. I would love to say I had the answer to dealing with this frustration, but the reality is it can be exhausting and demoralizing, and no matter how many times you try and stay positive or someone tells you not to let it bother you, it is still a lot to take in. Sometimes correcting a person’s assumption is truly satisfying, but the reality is it can be draining to correct the behaviour every time, so it’s best to pick your battles. This is where friends and family are critical; both to provide a buffer from strangers’ comments and, honestly, as silly as it sounds, by modelling appropriate behaviour.

I like to end these blogs with something upbeat, so, my best advice for dealing with this frustration is to stand up for yourself when you need to, but I think even more importantly, allow yourself to feel that frustration before you let it go. It’s a valid emotion, and it is hard to feel like you always need to rise above it, sometimes for your mental health you need to embrace the frustration, before you move on, because, unfortunately, moving on will always need to be that last step, otherwise it will just eat at you. As public awareness and honestly, social media, make complex visible conditions more accessible to those who have never had personal experience before, education and tolerance are rising, but for now, you’re still going to deal with the nasty people and at the end of the day, it is important to drop the baggage, but you are entitled to feel annoyed about it.

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