It will always be a part of me

Every year, I sit down at my computer and do my best to write something meaningful about CLOVES Awareness Day, and it brings on a lot of self-reflection. This is such an important day for so many people, and I’m so grateful to be a part of the community that never fails to come together in support of spreading awareness on CLOVES Syndrome. Every year on this special day, I am blown away by the sense of community among CLOVES families and how much we all lift each other up. One thing we know for sure is that support goes a long way, and that is why we treasure it so much.

I feel that as each year passes, I learn more about myself and the many ways that CLOVES impacts me as a person. There is a lot of learning in this journey of living with this rare disease, and the older I get, the more I discover about myself. Lately, I’ve developed what feels like a stronger sense of security in who I am, and I’ve been thinking about that a lot. When I’m out in public around crowds of people, I find myself almost daring someone to stare at my foot or make an ignorant remark so I can unveil the confidence I’ve worked so hard to achieve. I want to defy those stares openly to show the world that I will not be ashamed of who I am and what I look like.

Unsurprisingly, I’ve always wanted to keep my feet away from crowds to avoid those stares and when anyone did pay that unwanted attention on me, I would just try to fade into the background and ignore them. Now I feel like I’ve waved off those actions so much in my lifetime that I am done with simply waving them off. Stare at me all you want, but I’m not going to look the other way anymore. I will shamelessly return your eye contact so you know I can see you staring and I won’t stand for it.

It’s quite astonishing how much looking “different” can shape your entire life. CLOVES has of course impacted me in many various ways, but the one that stands out the most to me in the development of who I am is how different I am from others. My self-esteem has almost entirely been wiped out and built back up by the way that I look, the unwanted, negative attention my body can attract, and how I have coped with that.

A big chunk of my life, I lived feeling ashamed of the way I looked and afraid to show those different parts of my body impacted by CLOVES. Another chunk of my life, I found myself recovering from that and slowly working my way towards self-acceptance. Now I’ve discovered that after all the staring I’ve dealt with over the years, I just reached a point where I don’t always have the tolerance for it anymore, and this makes me feel more secure in who I am. I will no longer feel ashamed of how I look and will not hesitate to address any rude behavior when I have the energy to. I’ll always be working on my self-esteem because of how I was born, but knowing I’m finding more courage to do that work feels incredibly reassuring.

The more I reflect on these ups and downs in my life, the more I realize how significantly CLOVES has affected my development as a person. Though the road has not been easy, and it never will be, CLOVES has still played a vital role in shaping who I am – I’m not sure I would be the same person if I didn’t have CLOVES Syndrome. While it never has and never will define me, it will still always be a part of me.