‘In front of the entire train, he pointed at me and shouted, ‘Look at that freak!’ I broke down into floods of tears.’: Man with cystic hygroma shares self-love journey

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“Growing up in a world that is so beauty-driven can be hard for anyone and everyone. Does this outfit make me look good? Will I be judged for looking the way I look? On top of many other standards set by your peers and the media that is presented to the world every day. Life can be hard enough struggling to fit in, but you are never prepared for having a visible difference in addition to these standards that almost feel like they need to be met.

Newborn baby in NICU
Courtesy of Atholl Mills

I was born with a condition called cystic hygroma. This is a condition that causes cysts to form where you have lymph nodes. The condition develops in the womb and is caused when the lymphatic system develops abnormally, which creates blockages and cysts develop. The condition affects everyone completely different and there is not one case that is the same. For me, the condition affected my head, ear, jaw, and neck on the left side of my face. During surgery, when the doctors were removing the cysts from my neck, they severed my facial nerve. This resulted in me having a condition called facial palsy, which is the permanent facial paralysis on the left side of my face.

Boy with cystic hygroma smiling
Courtesy of Atholl Mills

Before I was even born, my parents were not given much hope for my survival. At one point, they were even offered the option to abort me and keep my twin sister. However, they chose not to do this. At the time, cystic hygroma was not a widely known medical condition and it still isn’t, so it was very hard to anticipate what kind of life I would be able to live. As soon as I was born, I was whisked off to surgery and my parents were told to say goodbye as the likelihood was I wasn’t going to survive. However, I somehow managed to survive the surgery. I was still very ill and the doctors told my parents it really was a miracle I was still alive.

Just when my parents thought it couldn’t get worse, it did. I contracted MRSA, the killer hospital bug. The doctors tried a variety of antibiotics to treat me but nothing was working and some I was even allergic to. In a last-ditch attempt, they gave me vancomycin, which saved my life.

Boy with tracheostomy smiling
Courtesy of Atholl Mills

Due to the unpredictability of how much of a life I could lead, I was given a tracheostomy, a breathing tube, and a gastrostomy, a feeding tube. My parents were also told I would probably not walk, talk, or be able to live a fully independent life. After spending the first year in hospital, I was discharged and allowed home for the first time. I credit where I am today to my mum. It was her strength and determination to fight for me my entire life that has got me to where I am today, whether it was learning how to use a variety of equipment to look after me, fighting for me to go to public school instead of a special needs school or getting me to eat normally and talk she is a true warrior.

Boy with dyed red hair smiling
Courtesy of Atholl Mills

Growing up, I was never aware I was different from anyone else. I lived in a small village where everyone knew everyone. However, when I was around about 8 or 7 years old, a new boy started at my school and I remember him saying, ‘You don’t look like the other boys. You look different.’ In that moment, it was almost as if a switch was flicked and I just became so much more aware of my surroundings. When my family and I would travel to the cities or bigger towns, I began to notice more and more that people would stare at me and in some cases, even make horrible comments and laugh. In addition to this, if I ever got into arguments with friends or other pupils at my school, my condition and appearance were always used as a way to mock me and put me down. This was really debilitating for my self-confidence. I started to hate going out on trips because I was just so worried someone would say something to me.

Once I started high school and met others from a variety of other schools, some did make comments and there were a lot of stares. But overall, I was very lucky my school experience was not one filled with bullying. I have quite a quick-witted tongue and whenever someone would say something to me, I was always fast with a come back to shoot them down.

Boy at eighteenth birthdat
Courtesy of Atholl Mills

As I got older and into my later teens, I really began to detest the way I looked. This was coupled with the fact I was so consumed with what others said about the way I looked and also because I was struggling with the fact I was gay. The gay community is very judgemental based on the way you look. Are you muscly enough? Do you look hot? For me, with a visible difference, I had a hard enough time thinking I looked good without also adding the pressure of comparing myself to gay stereotypes and beauty standards. This whole experience just made me feel like I was so alone and I had no one I could relate to or talk to. As I didn’t know anyone who was gay and also living with a visible difference.

Man with cystic hygroma
Courtesy of Atholl Mills

My confidence issues became so bad in my early twenties there was a period of time I rarely left my flat because I just hated the way I looked. I was just so certain I was going to get comments any time I walked outside. The situation really came to a head one day when I was on the train home from university. It was 5 p.m. and the train was packed. This was already a warning sign for me as I found crowded places too much to deal with and sometimes I still do.

Upon boarding the train, I noticed a group of two guys and two girls, who were probably of a similar age to me, sitting across from me. I hadn’t even made direct eye contact with any of them, when one of the guys stood up, pointed at me, and in front of the entire train carriage shouted, ‘Look at that freak!’ No amount of music I could listen to could drown out the fear and dread that had overcome me at that moment. I wish I could say that was the end of their jibes but it was not. They spent a large portion of the journey ridiculing me for my appearance and making jokes to one another. I managed to hold it together but upon getting back to my flat, I broke down into floods of tears. In this moment, I decided something needed to desperately change.

Selfie of man in sweater
Courtesy of Atholl Mills

I was so sick of giving the power of how I should feel about myself to strangers who I had never met before and decided it was time to take back control. That night, I blasted some music at top volume and started the process of beginning to find the love for myself I had lost the day someone had told me I was different from everyone else. I was, but I didn’t realize it at the time that was one of the best things about me that made me, me. In my journey of self-love, I discovered something massive. The reason I was giving so much weight in my own mind to what others said was I also thought the same horrible things about myself. In choosing to focus on taking back the power, I had unearthed a really unhealthy relationship that I had with myself.

The struggle with self-love is where do you even start to try and begin. My brain was literally like a computer that had been wired all wrong and everything needed to be rebooted. My first step was to take a photo of myself every day for 30 days and I HAD to compliment the photo, even on the days where I really didn’t feel up to it. Even if it was just something as simple as ‘You really suit that jacket’ was something that helped to build the foundation of a better relationship with myself.

Man posing in suit
Courtesy of Atholl Mills

In addition to this, I also had to re-evaluate the friends I was surrounding myself with. At the time, I was friends with a lot of negative people. That, in turn, made me more of a negative person and just helped breed this inner negativity within me. After cutting some people off, I can safely say I am a big believer in two things. 1) your surroundings can really affect your life and how you feel about yourself and 2) negativity breeds negativity. If you are constantly around people who are negative about themselves and others, it just makes you do exactly the same. This ideology was also carried through to the way I used social media. I started to follow more and more content creators who were body positive and posted more about loving themselves and their bodies than the holidays they were taking and flaunting their luxurious lifestyles.

Scottish man sitting on bench
Courtesy of Atholl Mills

Furthermore, one of the main things I had to do on my self-love journey, was come out. I was very lucky I was surrounded by a loving family and amazing friends who accepted me for who I was sexuality and all. This was a big key in stopping the self-hatred I had for myself and really helped me to be me on an even deeper level. I started wearing clothing I felt comfortable in and started to speak to others openly and honestly about how I was feeling, not just about my sexuality but about my disfigurement and how it made me feel. This was a massive turning point in accepting the way I look because, for the first time, I was open and honest with everyone, but in doing I was able to process everything out loud for the first time.

Professional man in suit
Courtesy of Atholl Mills

In 2016, I began posting more to social media platforms, specifically YouTube and Instagram, and started documenting my experiences of living with a visible difference. Whilst also posting content that represented myself and my interests. In doing this, it also made me realize I wasn’t alone and there were other people out there who were similar to me, and I was even able to meet people with the same condition as me, something I never thought would happen when I was younger. In 2019/20, I started to use the social media platform TikTok a lot more and have used humor as a way to educate others on people with visible differences and how we can be just like everyone else.

I have also shared my journey on self-acceptance and learning to love myself with my followers across all platforms. I have received countless messages from others about how I have helped them feel less alone and that I’ve helped them in their confidence journey, which has warmed my heart. To think when I was born, my parents were told I wouldn’t survive and now I am actively being the person I needed growing up, and helping others really is so crazy.”

Courtesy of Atholl Mills

This story was submitted to Love What Matters by Atholl Mills (he/him) from The Scottish Borders, Scotland. You can follow their journey on Instagram, TikTok, and YouTube. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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