My name is Sarah-Beth and I was born with short arms, my hands turned inwards and my blood platelets were extremely low. I had a 30% chance that I would make it to the age of three. I was later diagnosed with a rare biological condition called TAR syndrome which stands for Thrombocytopenia Absent Radius. To my knowledge, I am the only person in Wales with this condition.
Life has been…tough. Good, but tough. I have always had to think outside the box and be ten steps ahead in order to do things as best as I could. I didn’t have anyone to relate to in everyday life and only saw people like myself during TAR syndrome meet-ups in England every four years. I struggled with self-esteem from a very young age and the older I got, the more I realised I was different.
People would stare, a lot. I would be followed around and gawked at in supermarkets, pointed it and mocked. One especially awful incident was at a market on holiday, when an older woman grabbed my hand, said I was cursed by the devil and tried to cleanse me. I began to resent my hands.
I soon became anxious and depressed. I wished my disability would go away and began to self-harm. I developed a bad relationship with food and had an eating disorder. I was miserable. I just wanted to be ‘normal’.
I had to adapt everything I did. I had to think carefully about the clothes I wore, how to wash, how to brush my hair. As I hit puberty, I had to cope with even more changes. A month before my final year of comprehensive school, my legs felt painful so I went to see my leg specialist. TAR syndrome can also cause leg problems and although they had improved due to leg splints, the doctor told me that if he didn’t operate, my legs could collapse. My world shattered. I needed A levels to get into universities and now I needed two operations, with one of them happening the same week as my exams. There was no choice but to resit the year, meaning I wouldn’t start university the same time as all my friends. It was a gruelling year with many complications but it was worth it as now my legs are better than ever.
There’s no ‘cure’ to how I can sometimes feel about myself, as my disability will never go away and I will always be like this. But some things that have helped me are to focus on what I do like about myself. I dye my hair bright colours so people are drawn to my hair not my arms. I have started to experiment more with my style, trying clothes I wouldn’t typically go for. I love makeup and experimenting with different colours. I really like my eyes so I do what I can to make them stand out. I try and think of one thing each day that I like about myself.
That doesn’t mean that i’m 100% ok all of the time. Nobody is, but that’s ok. Some days I can only muster up the energy to make a drink and others I can’t even get out of bed. Sometimes I feel so low or feel nothing at all, and I can’t always give a reason why. That’s what is so cruel about depression as you never know when it can hit you. There’s a mantra in Frozen 2 that says “do the next right thing” and this has really helped me, particularly in quarantine. I hate not doing anything so I have really struggled over the past few months but this mantra reminds me that if all we can do is “the next right thing” that’s enough.
When my parents divorced I had counselling to help me process everything. They split up when I was six and I still have counselling to this day. To me it’s an enormous part of coping with depression and anxiety as it really helps to just vent to an impartial person. I have also been diagnosed with PTSD (Post-traumatic stress disorder) and BPD (Borderline Personality Disorder). At first, all these different disorders was a lot to take in but it can sometimes help as you can find similar people and a support system. Now, I have my own place with my amazing boyfriend, a family that loves me dearly and I’m getting a degree. Even on my worst days, I know I am doing the best that I can. I’ll always be different and people will always stare. I’ll always have to think ten steps ahead and adapt each situation to suit me. When people stare, I would rather people talk to me and ask questions. But I’m doing better than ever and just keep doing “the next right thing“.
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