Rare Life
May 26, 2022

How I Stopped Being Embarrassed and Started Deepening My Friendships

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Because I have Klippel-Trenaunay syndrome, maintaining a social life can be hard. But I’ve learned that concealing parts of myself is even harder.

Thirty-one years ago, I was born with a rare congenital disorder called Klippel-Trenaunay syndrome. Due to this disease, I have been hospitalized numerous times, often as a direct result of infections and surgeries. By the time I turned 30, I had been hospitalized over 100 times. 

When I was younger, this meant I often missed a great deal of school (I would work with tutors to make up the work). But despite the numerous unusual aspects of my day to day routine, I managed to live a relatively "normal" life for the vast majority of my childhood.

My mom and dad were always quite supportive and sympathetic in regards to my illness, but they also made sure to raise me akin to how they raised my two sisters. Because of this, I never quite viewed myself as someone living with a progressive, sometimes devastating chronic illness. When I entered elementary school, I made a slew of friends right away. I never felt like the odd one out; in retrospect, though, I guess I was.

As I grew older, it was undeniably harder to navigate certain friendships and relationships. Due to my illness, I couldn't always go out with friends as much as the normal teenager. Throughout the duration of high school, I was in and out of the hospital. Rumors swirled as to why I was absent so much — among these were fabricated stories saying I was pregnant, or that I had AIDS. I did my best to keep a low profile and ignore them, but it became increasingly difficult the older I got.

By the time I turned 18, I decided I was not going to hide myself away from the world anymore. I started my own blog, laden with stories of my experience with KTS. I sought to not only talk about the physical aspects of the disease, but the mental and emotional components as well. Writing became my primary way of expressing myself. I was so utterly grateful to have a platform where I could tell my truth and simultaneously garner awareness. It was undoubtedly the most liberated I had ever felt up until that point.

Upon entering college, I made some new friends and started to date. I knew, though, if I wanted these new friendships to last, I would have to nurture them. This meant being upfront in terms of why I couldn't always go out to a certain party or why I may not always be present in class. When I told my college friends about my condition, they were mostly kind and courteous (and a bit curious, too). I had spent so much of my life trying to hide my illness, and it totally backfired on me throughout the course of high school. Now, though, I decided that I was going to shift the narrative.

For so much of my life, I had felt embarrassed by my condition. I viewed it as my biggest flaw and was deeply ashamed of it. When I decided to no longer hide it, it became my biggest superpower!

Through writing my blog, I was able to help a myriad of people who were in medical situations similar to my own. That gave me the courage to stop trying to conceal anything about myself, which in turn gave my friendships and relationships room to blossom.

Now I am a single young adult doing my best to thrive in all aspects of my life. My illness is progressive, and unfortunately it impacts my life more than I care to admit sometimes. However, I have learned to find joy and pleasure in even the most seemingly menial of things. One facet of my life that brings me immense happiness are my friendships and relationships. I truly do not know where I would be without the love I receive from them on a daily basis.

One thing I have learned over the years is that it is vital to be honest and open in terms of any physical (or mental and emotional) limitations you might have. True friends will not make you feel inferior or less than because of them. A good companion will support you and cheer you on as you fight to live your best life possible. 

My disease is undoubtedly a part of me, but it does not define me as a whole. It is important for me to surround myself with people who understand that sentiment.

Still, the reality is that my condition can make it rather difficult to go out and engage in normal social activities. However, thanks to social media, I am able to video chat and write to friends and family with great ease. My friends understand that it can be hard for me to even meander my way down the hallway to the bathroom some days, let alone go out to clubs or concerts. They are so understanding and we engage in texting and phone calls instead. I am blessed to have an abundance of beautiful souls in my life who I am blessed to call family and friends. 

To anyone else worried what people will think: Never let anyone make you ashamed of your unique characteristics, and only engage with people who embrace them.

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