Happy Rare Disease Day! As I’ve mentioned many times, living with CLOVES Syndrome is a journey of ups and downs. There are a lot of challenges, big and small, that come with this syndrome that can make life tough sometimes. I happened to be thinking one day about some of the ways that CLOVES impacts my daily life and realized how I have never really talked about them because I found them to be irrelevant or uninteresting to others. And then I realized how much these seemingly small experiences have actually really impacted my life.
In honor of Rare Disease Day, I thought I would share some of these ways that CLOVES impacts me that most people may not think about or people with CLOVES may not always talk about. Of course, there are the big picture impacts – medical complications, lack of treatments, a need for research – but there are also details on the individual level that come with the day to day experience with CLOVES that the general public (or even the support network of someone with CLOVES) may not immediately think of that actually play a bigger role in our life than others may think.
I’ve talked a lot about how I’ve coped with my syndrome and the experiences I’ve had, the importance of awareness and research, and specific experiences such as genetic testing and going on certain medications, but I haven’t really gotten to the bare bones of it. I haven’t really brought to light the basic challenges that I face (and I’m sure others face) on a daily basis or just the thoughts that can run through my head day to day while living with CLOVES. I’m talking about the aspects people may not really think about because these experiences feel so everyday to us that we don’t really talk about them on a regular basis (or at least, I typically don’t). I figured for this Rare Disease Day, I would share the unique ways that my rare disease can impact me on a very basic level that others may also experience, which can really cause a lasting impact on life, and thus further bring to light the raw reality of living with CLOVES.
This is a given since CLOVES can so often affect the limbs and something that I’ve talked about often, but it is a huge part of my life with CLOVES that can really influence my self-image and self-esteem. Quite often, I will see a cute pair of shoes–something as simple as Adidas sneakers or a pair of boots–and think “I wish I could wear those.” And that’s about it–the thought is fleeting and disappears almost instantly, but it’s there. I can’t help but think like that when I see a pair of shoes I like and know I can’t wear. (For reference, I’ve only been able to fit into tennis shoes and some custom-made Birkenstocks all my life, all of which I do like now and am grateful to have found! But oftentimes, it can be tough not being able to wear shoes outside these options.)
Oftentimes, I will even be trying on clothes and think how a certain pair of shoes would complete the outfit, knowing that would be impossible for me. I still think that thought. I can’t help it. But again, it’s fleeting. I barely pay it any attention and never really tell people when I’m thinking like that. Because I can’t change the way I look, and while it’s tough to grasp and something I’ve fought with internally for years, I’m okay with that. I’ve come to terms with how I look, and I am happy. But that doesn’t mean I still don’t have those brief thoughts or sometimes think “what if.” It’s okay to acknowledge those thoughts and how they make you feel. As I’ve said many times, life with CLOVES is a journey of ups and downs. Oftentimes, I’ve found myself pretending that these things don’t get to me when really, they sometimes do. We don’t always have to uphold this strong exterior. It’s okay to feel however you feel in response to these thoughts or experiences, and it’s okay to talk about that with others if you choose to.
I know that others have struggled with my next topic: having to buy two pairs of shoes rather than one. Since my feet are vastly different in size, I need to buy a pair for my right foot and a pair for my left. Not only does this double the expense of shoes, but it also wastes the pair I can’t wear. Very little shoe companies sell shoes in single or different sizes. Zappos Adaptive recently released their single/different sized shoes program which is monumental (and I think Crocs just did too), but more shoe companies need to get behind that.
And I can’t really talk about the shoe struggle without also mentioning the sock struggle. Yes, I can even make socks a topic. I don’t know if anyone really thinks about how hard it can be to find socks when you have an overgrown foot. This is hard too! I typically have to really search (in person) for a good pair that will not only fit but fit comfortably. I usually need to find the biggest size of a pair, be sure that there is a good percentage of spandex in them, and check their overall stretchiness. I also have to buy two separate kinds of socks due to the size difference in my feet, much like the shoe situation. But yes, even something as simple as finding socks can be hard.
These aren’t typical topics I discuss with other people because sometimes I feel that I sound like I’m complaining, but it’s an important aspect of life that does have a profound impact on me overall. I have always made it work (“it” being finding shoes and socks), but it can still be a taxing process to go through. I’m sure others can relate – you’re not alone in this struggle!
Clothes + Body Image
I probably could have included body image as a topic up in the shoes section too, but it’s also been a big topic in wearing clothes as well. Finding pants has always been a challenge for me since my legs are two different sizes. I now wear leggings more than anything else when it’s cold out, as long as they’re stretchy enough for my foot to fit through the leg hole. I used to not like the way I looked in leggings or other form-fitting pants since they really accent the size difference of my legs, but I’ve learned to be okay with that. To be honest, now I prefer the way I look in leggings and jeggings, anyway (funny how your taste changes as you grow! Also: comfort).
Jeans are a whole other story. It can be very hard to find a pair that not only my foot fits into (usually the leg hole isn’t stretchy enough) but also that can fit over my entire leg. And even if I do find a pair that at least fits my right leg, it’s hard to find a pair that doesn’t absolutely drown my left leg since they are such different sizes. No pair of jeans will ever fit both of my legs perfectly, unless they’re form-fitting/jeggings or I get something custom-made (which I have thought about before but never pursued). Since I’ve been comfortable wearing jeggings though, they now seem to do the trick!
My mom can tell you horror stories of when we used to go shopping for pants back in the day before I found what works. I absolutely hated trying pants on because rarely did I ever find anything that fit or looked decently presentable. It was frustrating, annoying, and time-consuming. Something as simple as shopping for pants used to be such a grueling task before I found what worked, which may not be something people think about. This isn’t something I usually talk about with others because it feels so miniscule to me, and I don’t want to come across as whiney or complaining, but I’ve realized that it does play a large part in my life with CLOVES since it is one of those barriers I’ve had to face consistently.
I have always struggled with my body image since CLOVES has caused abnormalities on various parts of my body. While I’ve come to terms with this syndrome and now embrace the way I look because our bodies are beautiful, I still can sometimes look a little too long in the mirror with a critical eye on my bad days (we all have those days). The malformation on my back has become more swollen and pronounced in the past few years, which has been a struggle to deal with, to say the least. It was hard enough to come to terms with my overgrown leg and foot all my life, but now my back too?
I often don’t like wearing clothes that reveal my back or am hesitant to show my back in pictures. I do prefer to wear clothes that might cover my back up a little more, too – while I don’t always like the way it looks, it is also for comfort. If I wear something tight that clings to my back, it can be very uncomfortable. I find myself instinctively pulling at my shirt to loosen it. But there have been several times where I’ve looked in the mirror at my back and just started worrying – Has it always been that big? Is it getting bigger? Why does it look like that?
Sometimes I can’t help it. While I’ve become comfortable in my own body, I still have those days where I don’t always love every inch of it. We can’t be positive, upbeat people 100% of the time. Sometimes we have bad days and that’s okay.
When I find myself fretting at my image in the mirror, I eventually tell myself there is no point in worrying about this. This is my body. This is the way that I am. I’m not going to change. I’ve accepted this and am comfortable in my body and my own self-image.
My boyfriend also always tells me (in all kinds of situations since I am an overall worry-wart) “worrying is something to do, but it doesn’t get you anywhere.” This tends to remind me that this is not something worth worrying about because I can’t control those parts of my body affected by CLOVES. I am the way that I am, and I love myself as is.
Having a rare disease that does not have a cure and only has few potential treatments (that were only recently discovered) can require a lot of medical care. This might be something that people do think about when thinking about life with CLOVES since it is a medical condition. But to illustrate what it is like to have CLOVES, it’s important to talk about how big of a role medical care plays in our day to day lives. Like I said, each person is different and has different symptoms and manifestations of the disease, so others may see medical providers way more than me or maybe even less than me – it all depends on the person. But from my experience, I go to the doctor a lot more than my friends and family without rare diseases.
Growing up, I saw an orthopedic doctor, an interventional radiologist, a plastic surgeon, a hematologist, and went through multiple surgeries and procedures throughout the years. That might be a very short list compared to others with CLOVES who may have more symptoms to manage, but that was my experience growing up. I found myself missing school or leaving school early often to attend the routine appointments I had to maintain or undergo surgeries/procedures.
Now, it actually feels like I’m seeing a doctor more often than ever, but that is likely due to the fact that I am currently on a clinical drug trial that requires me to see my hematologist on the study frequently (blog post coming soon about that). I find that I am more aware of the frequency of my medical appointments now that I’m an adult working full-time because I very often have to miss work, arrive late, or leave early in order to attend many of these appointments. Thankfully, FMLA exists and my management is understanding. A huge part of life with CLOVES is having to see medical providers a lot more often because there are many parts of our syndrome that need managed.
Not only that, but since our syndrome is so rare, we have very limited options in finding the specialized care that we need. Believe it or not, I still see a doctor at my local Children’s Hospital as well as the vascular anomalies team at Boston Children’s Hospital because they are specialists for my syndrome. And the clinical drug trial I’m on is at a children’s hospital in Cincinnati, Ohio. For reference, I’m 26. But I can’t just “graduate” from my children’s care and move on to a team that specializes in adults with CLOVES because guess what – there are none! At least, none that I know of. Even when I switched from my pediatrician to a new primary care physician as an adult, I had to educate my new doctor on CLOVES because she had no idea what it was. Oftentimes, we are the ones educating medical providers about our syndrome. So to get to my point, medical care can be a daily and lifelong challenge in life with CLOVES.
What about activities that are simply off the table? I don’t always think about these things since I’ve been so used to sitting out of them all my life. I’ve never gone skiing, rollerblading, or ice skating before because fitting my foot into a pair of any of those would be impossible. I mean, buying shoes and socks is hard enough, let alone finding a pair of ice skates. Is there a possibility that I could have something custom-made? Perhaps, but I don’t even know where to begin with that. But this can and has left me out of social activities when my friends have wanted to go skiing or ice skating before (I’m not sure my friends have ever been into rollerblading, but I would absolutely try it if I could). If invited to these kinds of activities before, I’ve had to just politely pass on the offer, knowing it isn’t something I could partake in.
Other activities I’ve struggled with, simply due to my foot not fitting into something, include using an exercise bike or riding a roller coaster. Yes, a roller coaster.
When I try to use an exercise bike at the gym, my right foot doesn’t fit into the pedal strap so I have had trouble using those in the past. The straps don’t always come off fully, so if I really want to use the bike, I might just place my foot on top of the strap to use it, even though it feels awkward. Or if the strap can detach, I’ll just bike without the strap holding my foot in. In any case, it can be pretty frustrating and hard to use.
Lastly, I’m sure you’d like me to get to the roller coaster thing to explain why in the world is that an issue? Well, typically it hasn’t been, but I did have an experience on a roller coaster at Cedar Point that completely embarrassed me when I was in high school. It was one of those coasters that shoots up really high and then comes down backwards. I waited in line for a while with a friend of mine, and as soon as it was my turn, I ran to the coaster and took a seat, but the foot room was so limited that my right foot actually did not fit in the coaster. I tried my best to put my foot on the floor, but it wouldn’t fit so my foot was awkwardly hanging off the side. This threw me into a panic as I didn’t want the coaster to take off with my foot like that, and I was mortified that my foot didn’t fit with everyone in line watching, so I just let myself out and ran off the ride.
Those are just a few examples of how CLOVES can, unfortunately, limit our experiences in some ways. It’s not always easy, I’ll tell you that. I don’t often find myself talking about these details of life with CLOVES because I’ve been so accustomed to them in my daily life for so long that I never really found the need to talk about them as regularly as other experiences I’ve had. They’re so normal to me, so why would anyone care about these everyday nuances?
But I’ve realized over time that these challenges of this syndrome are just as important as any other challenge I’ve faced and just as impactful on my life. We shouldn’t be minimizing the hardships we face or barriers that we’ve overcome just because they feel “normal” to us. Sometimes, these everyday difficulties that impact our daily lives can be some of the hardest challenges that we’ve faced because we have to live with them every day. These are challenging aspects of our life and they are hard. That is okay to say!
Life with a rare disease is tough. What I’ve come to realize while writing this post is just because there are some aspects of this disease that we may feel are irrelevant to the bigger picture doesn’t mean those aspects aren’t just as important as the rest of the seemingly bigger challenges we face. It is just as important to talk about these everyday struggles. They are 100% relevant.
Finding shoes is hard. Struggling with body image is hard. These are vital parts of our life that we should talk about. Sometimes, the weight we carry with these everyday internal struggles may become so heavy that we may feel more down some days or not be as positive as usual. There are days where you may feel upset with your body. It’s okay to have these feelings, and it’s important to acknowledge those feelings. Like I mentioned earlier, we can’t always be 100% positive all of the time. Everyone has those hard days.
Talking about these experiences, especially when you’re feeling particularly down, is incredibly important. I find so much value in sharing our experiences (when comfortable with it, of course) so that others can try to acknowledge the difficulty of living with CLOVES (or another rare disease). Sharing with your support network is crucial as well so that they are aware of how hard this journey can be and know to check in on you.
This life isn’t an easy one. We’ve all been through varying degrees of hardships. I’m hoping that sharing some aspects of my own everyday struggles can shed some light on the parts of life with CLOVES that most people may not have been aware of before. Whether others can relate or not, I’m hoping they at least know that it’s okay to talk about the everyday challenges we face, even if they might think they’re trivial (they’re not!). I can speak from experience and say that opening up and talking about my experiences have helped me grow in my own journey, and I’ve realized that those seemingly “normal” everyday troubles are just as important as any other experience we go through.
This Rare Disease Day, keep in mind that every experience you have living with your rare disease, whether big or small, matters. And the feelings that ensue from these experiences are valid. When comfortable, it’s okay to talk about these experiences and share with the world how tough it can be, if you choose to. This journey is quite a roller coaster, filled with ups and downs, good days and bad. While we can feel low sometimes, I know that we’ve also gained the strength through experience to get through those bad days.