Not too long ago while at the gym, I was completing a set on the squat rack when I noticed an older man across from me on the other squat rack giving me odd looks. I could tell he was staring at my overgrown foot so I responded to this in my usual fashion – slight eye roll, avoided his eye contact, and kept minding my own business. Oftentimes when I notice people blatantly staring at me, I just try to ignore it. It’s become such a normal part of my life at this point that ignoring it is all I can do.
After I finished another squat set, I had come to the internal conclusion that this man was just being rude and was not worth me getting frustrated. But then I noticed him take out his earbud and try to grab my attention (like everyone else in the gym, I had earbuds in as well). I took mine out and cocked my head at him, waiting to see what he had to say, but already knowing what it was.
Oh boy, here it is. Time to give my elevator speech about my rare disease again.
“Are you recovering from a leg injury?” he asked politely, out of breath from his workout.
I’m just going to assume he was asking this because he saw my squat sets and was probably wondering how I could do such a thing with a swollen, injured leg.
How this is his business though is beyond me.
I looked down at my leg instinctively, as if I had to check which leg he was referring to.
“No, I was actually born with a rare syndrome called CLOVES Syndrome,” I responded, to him for the first time but for the millionth time in my life overall. “It’s an overgrowth syndrome and very rare, so I’m used to people asking.”
For some reason, in these situations I always say that I’m used to people asking me about my foot in my initial response. If I don’t, they often respond to my CLOVES spiel with “Oh I’m so sorry I asked – I thought you had a boot on or something from an injury!” (As if it that was okay to ask a stranger about?)
Or there are plenty of people who don’t feel the need to apologize, but regardless I feel like if I tell them that first, I can perhaps skip that apology and stage in the conversation all together.
Because while these situations can be uncomfortable or frustrating for people like me, I don’t blame them for wondering. It is a rare syndrome, and each and every one of us is affected uniquely so they’ve probably never seen someone who looks like me. Just go about your wondering in a respectful way. Please.
“Oh wow!” gym man responded. “And you can still be active and everything?”
I swept my arms out as if to prove my activeness. “Yep, thankfully I’m able to.”
He nodded enthusiastically. “Well that’s awesome!”
To top it off, he gave me a fist bump before we both went back to our respective workouts.
I always leave these situations with mixed feelings. On the one hand, this man was very polite in his approach (other than the staring initially) and response, and I was able to educate one more person about my rare disease.
On the other hand, these interactions can just become exhausting after experiencing them so many times. Yes, I enjoy educating others about my rare disease, but do we have to do it all the time? Do we really owe it to every inquirer to educate them on our rare disease and answer their burning questions on the spot while we’re just trying to go about our day?
Thankfully, this was a good day for me and I didn’t mind explaining CLOVES to him and answering his few questions. And for the most part, I’m asked these questions on good days. But sometimes I’m not. Sometimes I’ll be walking down the street and see someone staring aggressively at my foot and then look right into my eyes and repeat this cycle until I’m completely out of their eyesight. This type of situation really irks me. Either they were being incredibly rude and didn’t care that I noticed them staring or they were (again, rudely) trying to get my attention to ask about my foot that they’re staring at. Regardless, that type of behavior gives me no interest in speaking with them so if they were trying to get my attention, I was trying my best to avoid theirs.
Just a little side note – the cherry on top in those scenarios is when I walk past the person staring, and they actually turn around to keep staring at me. Sometimes they stop walking all together just to get another long, good look at my foot before they’ve finally felt like they’ve seen enough and continue on with their day. PSA to everyone out there: don’t be that person.
I feel like I have a sixth sense about people who decide to transition their staring into actual questions. I notice them slow down a little and redirect their attention from my foot to my eyes. And on the not-so-good days, I might try to avoid their eye contact and keep moving so they don’t have a chance to ask me their burning questions about why my foot is so big. Yes, I admit to this. Because sometimes I’m just tired. Sometimes I just want to live my life and not have to answer to the stranger on the street.
And you know what? That is completely okay. We all deserve a break. We also do not all have the responsibility to educate every single person out there on their time. If spreading awareness is important to us, maybe we’d rather educate others and spread awareness on our own time when we’re in the head space to do so. When we are prepared to and comfortable with doing so.
And that’s what I’ve been taking away from these situations lately. For so much of my life, I felt like I had the responsibility to educate everyone who asked me about my foot or leg, regardless of the situation or the mood I’m in. I’ve always just thought “here is a great opportunity to educate one more person about CLOVES, and I see that as a win.” And yes, this is true, but I now realize how downright exhausting this can be when you’re doing it over and over and over again. Sometimes I’m just not in the mood, and that is fine. We have to keep our feelings and mental health in mind.
And for those people who are in the gym man’s shoes, just a gentle reminder that there is no need to stare. Either let people live their lives or politely ask a question if it seems appropriate and you really must know. And if someone doesn’t want to answer your question, be understanding. It can get tiring to constantly answer questions thrown at people about their disease or the way they look. We don’t always have the energy to do it.