All my life growing up, one of the worst parts of living with CLOVES that always gave me anxiety was when strangers would ask me what happened to my foot. The stares, points, and questions about my syndrome really brought me down, and having to awkwardly respond to people when they asked that question was just so embarrassing for me. All I ever wanted growing up was to blend in and have no attention focused on me. It really sucked, having not only attention on me but negative attention because of my syndrome.
Because I’m different.
People don’t know how to handle ‘different.’ And people out there can be really rude or ignorant which just makes the whole experience worse, especially growing up during the vulnerable time of adolescence. I’m sure others with a rare syndrome like CLOVES can relate to this.
What I’ve come to realize growing older is that I mind this whole experience a lot less now. This is honestly shocking to me considering how much I have despised experiences like this all my life (as stated above).
Yeah, it’s still quite a nuisance to have to repeat the same thing to people when they ask me what happened to my foot, and yeah there are some mean people out there that I’d rather not waste my time on, but the way I see it now is it’s an opportunity for education. This is my chance to explain to an unknowing stranger what CLOVES Syndrome is.
We all know by now how significant spreading awareness and advocacy are for rare diseases. While I’ve been doing this on a system-wide level by spreading awareness on social media and contacting my local elected officials, I do find that doing this on a more personal level is just as important. Spreading the word about CLOVES and educating people face-to-face when the opportunity presents itself can be just as effective, if not more effective because it’s personal.
I feel that the older I’ve gotten, the more I seek out these opportunities. When people ask me about my foot these days, I get a little more animated and inform them that I have CLOVES and then explain to them what CLOVES is. Sometimes when people feel bad about asking once they realize my overgrown foot is due to a syndrome and not a boot from an injury (eye roll), I tell them not to feel bad at all because they just allowed me the opportunity to educate them and now one more person knows what CLOVES is. We’re making a difference–a difference we can see–one by one by doing this.
So contrary to how I’ve felt most of my life, I actually am glad when people ask me about my foot. This is an opportunity to educate, advocate, and inform. I am happy to advocate for my syndrome in any way so nowadays I actually welcome the idea of people asking me about my foot. I’ll take any chance to advocate for CLOVES and if anyone else out there likes to advocate too, this is a perfect opportunity because we know we’re going to keep getting questions about our syndrome. That’s just the life of having a rare disease–let’s embrace that though and use it to our advantage by educating others about our disease when we have the chance.
One thing that I have started to do now is hand out these little fact cards about CLOVES Syndrome that I got from CLOVES Syndrome Community. They have a few quick facts about the syndrome and then the website on the bottom, as seen below.
This is a simple, easy way to spread the word about CLOVES, especially if you don’t feel up to talking that day. And even if you are giving the full explanation, it can be good to have something physical to hand out so that others remember your conversation even after a busy day.
It’s like networking for CLOVES!
What I’m getting at here is that we can take situations that we normally find irritating or embarrassing and turn them into a positive experience by looking at it a different way, such as an opportunity to educate the public about our syndrome. This has made me dread those encounters less and feel better about responding to people asking about my foot.
Not only that, but it’s also a message to the younger CLOVES population out there to let them know that with time and growth, you may start to see certain experiences in a different light. When I was still a teenager, I thought that nothing could be worse than these awkward, dreadful encounters and that they would never end. Everything seemed like the end of the world back then.
But now I’m almost appalled at how much I let those experiences impact my life during those times. I now realize that life is so much more than those uncomfortable encounters when I look at them compared to the big picture and maybe we can turn those experiences around.
And maybe you don’t like talking to people who ask about your syndrome or spending anymore time around them than you need to, and that’s okay. Or maybe you’re already at the point where you’re comfortable talking to people about your syndrome–wonderful! I just wanted to share my perspective (out of many) in hopes it helps others realize that it’s possible for these situations to suck a little less the older you get, if you do find yourself struggling with these experiences.
Of course, it may be more challenging for some, and sometimes there are those experiences that are so bad that it’s not even worth educating others about your syndrome (there can be some mean people out there!), but looking at it in a more positive light like this can hopefully make facing these situations a little less scary.