What it means to be rare

What does it mean to be rare? Being rare isn’t easy. And it’s different for everyone. For me, it means a childhood of searching the ends of the earth for a correct diagnosis, undergoing experimental surgeries and procedures, and wondering what the future holds…

It also means waking up sometimes with random backaches where I have lipomatous tissue but oh well, that’s normal for me – time to pop an ibuprofen or use my topical pain gel on the affected area.

It means wearing out the same old shoe I’ve been wearing for years and then realizing, oops – my pinky toe is poking through the mesh again, time for a new pair. There goes another $200 for two pairs of shoes that really is only one pair for me – one shoe for my left foot and one shoe for my right foot since they’re vastly different in size.

Being rare means wearing that same old shoe for basically everything in my life and categorizing these black tennis shoes as my “good shoes” or “nice shoes” or “every day shoes.” It means asking myself the question “which tennis shoe will I be wearing for this activity/day?” because certain tennis shoes are the only covered shoe I can fit into.

Being rare means sometimes buying these shoes in bulk or keeping old, beat up ones way longer than I should because I’ll panic about the possibility of the shoe company discontinuing them for some reason in the future and if that were to happen, where would I get my shoes then?

Being rare means the usual routine of nearly unbearable pain when breaking in each new tennis shoe by squeezing my wide foot into it and waiting several days for the shoe to slowly break in to somewhat of a comfortable fit after it’s been somewhat stretched out.

Being rare means feeling over the moon for the ability to wear Birkenstocks on those dressy days, after getting the straps extended at a leather shop of course, and getting used to the sole of the sandal not being wide enough for my foot but dealing with it nonetheless.

Being rare means having an incredibly painful blister on my pinky toe for as long as I can remember that never goes away because my foot is so wide that my pinky toe rubs constantly against the inside of my shoe. And man that blister is so painful that if I even just slightly bump it on any object, I endure a lovely small moment of excruciating pain. But, that’s nothing new. That’s every day for all of my 27 years of life.

Being rare means getting holes in my socks so quickly after buying them that I’ve just resulted in buying my right-foot socks in bulk which still only lasts as long as a regular pack of socks.

Being rare means popping my not-yet-FDA-approved medication in my mouth every morning with the hopes that one day it will maybe reduce swelling in my lipomatous tissue on my back even though I’ve now been on it for almost 1.5 years and have noticed minimal change and every check of my back in the mirror yields a sigh and a shoulder slump.

Being rare means going about my day every day, seeing the eyes of many passing strangers lock on my foot but not really seeing that anymore because I’ve grown so numb to the staring at this point in my life.

Being rare means taking off 16 days of work (so far) in the last 1.5 years to travel 10 hours roundtrip with my mom to Cincinnati for my ongoing clinical drug trial.

Being rare means having that constant, overarching fear of the unknown always on my shoulders, threatening the normalcy of my future – will I be able to safely have children in a few years? Will I have unexpected medical complications that could risk my life in the future? Will my symptoms suddenly exacerbate someday?

Being rare means laying through a routine 5-hour full body MRI every 3 years to monitor my disease and assess for any new changes or complications.

Being rare means feeling self-conscious of every single picture of myself showing the lopsidedness of my back where my swollen lipomatous tissue lies.

Being rare means cropping my overgrown foot out of nearly every picture I posted growing up, thinking somehow I could hide the part of me that I was most self-conscious of (and later realizing it’s not something that can be hidden).

Being rare means having a childhood to look back on filled with endless stares, whispers, and pointing at my overgrown foot and having to not only get over that somehow at such a vulnerable stage in my life but also get used to that.

Being rare means still receiving medical care related to my rare disease at children’s hospitals at age 27 because I have yet to find a medical provider who specializes in CLOVES Syndrome at an adult hospital.

Being rare means educating any new provider I encounter on my own disease because they have never heard of it before since it is so rare.

Being rare means having to fight for my insurance to cover my genetic testing just to prove that I have the CLOVES-causing PIK3CA gene to enroll into my clinical drug trial and ultimately losing this fight after 2 appeals because my insurance viewed this test as “experimental.”

Being rare means every day, seeing the many scars on my body from past surgeries that feel as much a part of me as any other body part because I am so used to them.

Being rare means wondering if and when I should transition to the other available drug trial because the current one I’m on is not yet yielding as effective results as expected.

Being rare means having an ongoing internal struggle with body image and often thinking “If I didn’t have CLOVES, I would wear those shoes or this swimsuit or that dress” knowing it’s all just fantasy for me.

Being rare means constantly having to answer the question “what happened to your foot?” over and over again all of your life to the point where if I now notice that a stranger is about to approach me to ask this question while I’m going about my life, I sometimes act like I don’t see them and walk away to avoid having to hold that same conversation yet again. Because while I like to educate others about my syndrome, it can just get so exhausting sometimes.

Being rare means feeling afraid to meet new people growing up because that just meant they’d wonder about the way I look, and I’d have to explain once again why I have a big foot.

Being rare means trying my best to stay positive about my disease and life but sometimes it just gets too hard and all I want to do is feel sad for a moment and truly feel those feelings instead of constantly mask them, like I so often do.

Being rare means many, many things, but easy isn’t one of them.

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