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Living with a life-threatening condition

Becca is 22 and was one of the first people to receive care and support from Chestnut Tree House when we first opened in 2003. Here, Becca has kindly shared some of her thoughts about living with a life-threatening condition.

This is me

It takes a lot of courage to let someone know the real you, imperfections and all. Everyone has their own insecurities, but for most people, they are easy to hide until you want someone to know the whole you. I think of myself as two people. On the one hand, I’m pretty ordinary; as a 22-year-old woman who works as a Marketing Executive, I’m doing most of the same things others are at my age. I love socialising and going to the pub with friends, my family are rather mad and it’s definitely never quiet in our house, but I love how crazy we all are. At the minute, I spend the majority of my time trying to juggle a full-time job and preparing to move into my own house.

That’s who I think of myself as, and then I catch my image in the mirror and get shocked that my other half is staring back at me. The other half is more complicated, more… challenging. I have a life-threatening condition. I’m in an electric wheelchair and need assistance to complete all everyday tasks from getting out of bed in the morning, to picking up a glass of water, to scratching my face. My lungs are so susceptible to infection that a simple cold can lead to pneumonia and hospitalisation. My swallow has deteriorated so much that I can now only eat pureed food. But I’m lucky, children with the most severe form of my condition rarely live past infancy.

Like it or not, I am both of these people, and it took me a long time to accept who I am. But I am different, and I feel it in everything I do. Some days that feeling doesn’t bother me, it just quietly sits at the back of my brain, and other days the differences seem so big and unbearable that I struggle to catch my breath. But the way to overcome these differences is to surround yourself with people you love. They will love you because of your differences, not in spite of them. Because there is a beauty in every imperfection, and light in every darkness.

Becca photo

Becca’s seven musings on life

I wanted to take this opportunity to share my seven musings on life. These are things that are personal to me. Maybe something I have struggled with, or still struggle with. Something I have overcome, or something I fear.

Surgery

I had my first surgery when I was five years old. I was a very ill child; in and out of hospital four or five times a year for weeks, sometimes months at time. Because of this I was severely underweight, and my parents struggled immensely to get me to take vital medications such as antibiotics. When I was five it was decided I would have an operation to have a gastrostomy fitted. This is a button that sits on top of the skin of my abdomen and means medication and nutrition can be given directly into my stomach. Since then, it has been so much easier to take medication and control my weight. For anyone who is contemplating surgery and is worried that it will make your body look strange and add to your ‘abnormalities’, your feelings are valid. It is a scary thought and change in your life, but there is nothing abnormal about something that helps you live a happier and more fulfilled life.

Losing abilities

Although my condition isn’t classed as degenerative, I cannot grow muscle mass and therefore getting older meant I slowly lost abilities. I lost the ability to shuffle around the floor, then sit unaided, then lift my arms above my head, and many other things. Some are much smaller, and to most they probably wouldn’t see the difference until we compared how I was a couple of years before. But every loss is impossibly hard, and the thought of further progression is terrifying. It can be difficult not to hate your body, but try to be kind to yourself, give your brain time to grieve, and become inventive about new ways you can do the things you love.

Mental health

I have had anxiety and depression since I was 14. I’ve probably been in and out of therapy for a total of five years. It is a constant struggle every day, and Coronavirus has been a trigger for me for a variety of reasons, not least that it poses a massive risk to my life. I have good days and bad days. But I am so proud of myself for graduating university with a first-class degree and finding a job that I love during the height of Covid-19, and I am proud of myself for what I have been through. For now, I have stopped therapy and am currently managing. Will I need to return at some point in the future? Probably. I have come to accept that I will live my life with mental health issues. But I have come such a long way in learning how to cope with it and to be kind to myself when I am struggling, and I am grateful most days (every day would be a lie) that I am still here to ride the waves.

Carers

I have had carers support me since I was five years old, and I would say it’s one of the hardest things about having a disability. I have had over 130 carers in my lifetime, and it never seems to get easier training new people or letting them into my life. They help me with every aspect of daily living, and it is hard not being able to do anything for yourself, but I find the relationships formed even harder. There are many carers who I haven’t really got on with but have needed, some who have been pleasant enough, and some who have become lifelong friends. It’s always so hard when people move on or turn out to not be who you expect. But to those that have helped me through many hard times, thank you so much. I have made some amazing friends through needing carers, and some watched me grow up and supported me through huge milestones in my life, and for that I am forever grateful.

Family

One of the main psychological issues I’ve encountered with being disabled is feeling like a burden. I used to struggle a great deal, and still often do, with the amount my family has to help me, and all the difficult times and sacrifices they have been through because of me. COVID-19 has resurfaced many of these insecurities for me, and troubles for my family; since the beginning of the pandemic my dad, brother, and sister had to move out of our family home for over six months to protect me when they returned to school. For more than half of the last 18 months, they have had to drastically restrict what they do outside of the house to ensure my safety. Since we are all double vaccinated, we have made the decision to return to normality as much as possible, but I know they worry every day for me.

It’s hard to not feel like you’re making people’s lives difficult, but those around you love you and want to keep you safe. None of this is your fault, you didn’t ask for this and loved ones know that deep down. To my family, thank you for being my rock through everything and never giving up on me.

Perceptions of disability

One of the biggest changes our community need to see is people’s perceptions of disability. These perceptions stem from ideas that have been either directly or indirectly instilled in children from a young age. For all of you who have children, we would much rather you let them ask questions than hushing them if they point or say something. Most of us are happy to answer questions. By telling them to be quiet and pulling them away, you are creating the idea that disability and physical difference is something to be ashamed of. People fear what they don’t understand, and if they are not allowed to ask questions, the younger generation are going to continue thinking we are ‘other’.

Perseverance

Up until about 10 years old, I was in and out of hospital a great deal, to the point that I was sometimes only in school for half the year. Because of this my academics were very poor: I learnt to read two or three years after my classmates, and I had several tests to see if I was dyslexic because of my weak abilities. In high school I worked extremely hard to get my grades up and went from being well below average to the most improved student in the school, as well as in the top 5% most improved in the country from year six SATS to GCSE grades. I’m not saying this to sound big headed, I’m offering this as a message that disability does not mean you can’t have big dreams; with perseverance, hard work, and support comes great achievements.

This is just part of my journey living with a life-threatening condition. And I hope that by sharing my story, I will help somebody feel less alone in their journey.

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