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By Kenzie Getting diagnosed with an illness or disorder, whether mental or physical, can be really difficult to deal with. You wonder how it's going to affect your life, you wonder how it's going to affect your family and you ask 'why me?' I know how this feels. I've been through it.
In 2020 (as if that year wasn't bad enough already…) I was diagnosed with myotonic dystrophy. According to the NHS, myotonic dystrophy is defined as “a progressive condition, which means it gets worse over time. It often begins by affecting a particular group of muscles, before affecting the muscles more widely.” Myotonic dystrophy is one type of muscular dystrophy or MD which could affect the heart or the muscles used for breathing. My myotonic dystrophy is genetic, meaning that I was diagnosed with it due to my father having it and passing that gene mutation on to me. Since then, I have had to go through a multitude of blood tests, heart tracings, lung function tests, strength tests, and pretty much every other taste you can name under the sun. My diagnosis was really difficult for me because it meant that I had to really think about my future, in particular my future family. I have always wanted to be a mum and my diagnosis means that it won't be as straightforward for me as just trying for a baby. I will have to have tests on my eggs, may have to go through multiple cycles of IVF, will have to have risk assessments and tests throughout my pregnancy, and am at a higher risk of a stillbirth or cot death. This was devastating for me to learn. I didn't care about the muscle wasting part of MD - I only cared about the genetic childbearing part. There was and still is nothing I can do about my diagnosis. It's a matter of playing with the cards I've been dealt and rolling with the punches. The following things are some things that helped me to cope with my MD diagnosis.
This is why support groups and message boards are amazing. They are places you can go which are free of judgement, free of stigma, free of shame. They allow you to talk to others who have been where you are and you can get advice, support, guidance, and reassurance from people just like you. It allows you to form a connection with others like you and it helps you feel less alone.
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A hidden disability is an umbrella term to capture a spectrum of disabilities that mainly affect the brain. Let me tell you about how my hidden disability has not only changed how I live forever, but also has shaped me into the person I am today.
At age 16, while on holiday in Florida with my family, it took approximately seven minutes for my life to change forever: I had my first ever epileptic fit. I had never suffered any form of disorder relating to epilepsy previously and at the point I have developed the condition I will be fighting to keep it under control for the rest of my life. My first ever seizure was an interesting experience to say the least… I remember two things from the experience: arguing with the paramedics that “who is the Queen is a stupid question” and asking my Mum what theme park we were visiting that day o, yes, in short the condition does have its lighter moments. However, in retrospect this was one of the scariest moments of mine and my family’s lives. Picture the scene: you are enjoying a holiday and 24 hours later you are watching your son/baby brother being diagnosed with a condition he never knew he had and you didn’t know how to deal with. Like most disabilities, both hidden and visible, epilepsy has affected me physically. It has also taken its toll on me mentally. I cannot drink due to my medication and for many years this made me feel excluded. I thought it made my 18th birthday feel insignificant and on more than one occasion I would not be invited on nights out because I am “boring” because I don’t drink. I have also never been able to learn to drive up until this year and that was without a doubt a knock to my confidence. However, if I could go back and tell my younger self and any kids here anything, it is that you don’t need to have a drink to have fun; you just have to surround yourself with the right people. Surrounding myself with the right people means my day to day life is now incredibly boring and my condition is well under control. I have wonderful friends, family and a consultant who has struck gold with my medication… big up Dr. Steiger. I know I will never be cured and it does dawn on me from time to time that I am fighting a somewhat invisible enemy, but I like to think I embrace that. Epilepsy is a condition that can strip you of your dignity, therefore embracing what comes at you is really your only option. I have been found in some states that could be described as questionable following seizures… conditions that I am very much sure I am not allowed to talk about in this article. However, in a strange way, for me at least, the strange injuries and downright weird incidents have helped me build my character; they give me stories to tell and jokes for people to laugh at. I want people to be able to talk about my condition and it gives me great pride to be writing this article because it gives epilepsy a voice. I want people to embrace having discussions about disabilities both hidden and visible. Danny |
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Teenagers With Experience is an online organisation created to provide teenagers worldwide with an online platform to share their own experiences to be able to help, inform and educate others on a variety of different topics. We aim to provide a safe space to all young people. You can contact us via email, social media or our contact form.
Please note that the content on this website is created by teenagers. While we strive to provide accurate and helpful information, it is important to remember that we are not professional experts. If you are experiencing a crisis or need professional advice, please reach out to a qualified mental health professional or a helpline. |