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An Invisible Illness Ruined My Life Because Nobody Knows I’m Disabled

Before I begin, I want to include a small disclaimer that I will touch on triggering subjects in this post, including suicidal thoughts and self harm. These experiences are personal to me and I am not speaking for everyone who has ever lived with mental health problems. If you or anyone close to you suffers mental health issues, please seek out mental health professionals or even just make an appointment with your GP and please do not use this as your own diagnoses, I am anything but a doctor.


Hello, my name is Kelly, I am 25 years old and I cannot leave my house unaided.

Honestly, I think this has been a long time coming.

DYSPRAXIA

dyspraxia
a developmental disorder of the brain in childhood causing difficulty in activities requiring coordination and movement.

I have had Dyspraxia my entire life and it has stunted my life dramatically. I was never the child who ran around the playground, I was the child who never ran around the playground, in fear that she would fall over.

I cannot partake in sports, I cannot walk up the stairs in a timely manner and if at any point anyone tries to rush me walking, my legs will freeze and I will stumble, trip, lose my balance and fall.

With Dyspraxia, I had to be fully aware of my surroundings because if I missed a curb or tripped on a leaf, my legs would freeze and my body would become rigid. My whole body would spin around and I would hit my head on the ground (hello, multiple fractured skull and concussions).

I have been in the A&E more times than I can count and when I was 10 years old and in the playground, I tripped and I fractured my skull. I was out of school for a month and nearly, almost died.

This caused a chain reaction, which in turn caused…

ANXIETY

In the UK, up to 2 people in 100 have panic disorder. It’s thought around a third will go on to develop agoraphobia.
Agoraphobia is twice as common in women as men. It usually starts between the ages of 18 and 35.

I have had anxiety for as long as I can possibly remember. I have even been diagnosed officially with Generalised Anxiety Disorder.

I have always been a fearful person, maybe that’s because I am so overwhelmed with being subjected all the time, to the bad that happens in the world or whether that’s just the bad experiences that I have had, that have led me down this route.

My family life was never anything special or downright awful and I guess I could say it was quite normal. I lived in a small, countryside, village that by my admission was in the middle of nowhere, but in reality was only 30 minutes walk away from the next village, and an hour away from the town. My mother and my father are still together after 40 years, my brothers are 8 and 10 years older than me. However, my brother is autistic and where normal kids would fighting for the attention and the affection, I hermitted myself. I became a recluse. I have always been a lone wolf in my one man pack.

To my mother, emotion was a weakness. I never cried in front of her, I never hugged her, we never were close. This made me anxious about being anxious.

BULLYING

I will admit, I spent a lot of time on Facebook during my high school years. Again, this was because, by my own admission, I lived in the middle of nowhere. This was the only way I could stay in contact with my friends from school, I couldn’t ‘play out’ with them, they lived 10 miles away and I couldn’t drive — I was 12. I was, also, constantly worried about how I would get home if I somehow managed to get there.

This is when the abuse began.

I would log into Facebook after school and I would get notifications that someone had commented on my pictures or my wall. They would say things such as “she’s always on here. She’s got nothing better to do. She’s got no friends. I bet she’s on here now. What a fucking loser.” I’ve toned it down slightly and not included even close to half of the comments that were made to me but still, they existed and still do if I were to reactivate my account.

I deleted my facebook, but these weren’t just random people who were being ‘keyboard warriors’. These were people I saw 5 out of 7 days of the week. My anxiety had never been worse and depression really started to hit home.

I skipped a lot of school, a lot. I had days off and pretended to ill. I even got sent home, a lot. The student support team stopped believing me, so I would physically make myself throw up — you throw up, you go home.

That was a dark moment in my life. I was being harassed constantly, at school and online, I had no one fighting in my corner. I remember one day I came home from school and I just went to bed. I felt so emotionally weak, and in those times I had so many thoughts of suicide, I was too cowardly to actually do it. I wanted the pain to end. Instead, I would cut myself and I would starve myself, I gave up.


MY ENVIRONMENT — 2017

At this time I was living with my boyfriend and his sister and I had been since 2014.

My boyfriends sister was passive aggressive towards me, she left sticky notes all around our apartment. She had taken over every room in the apartment, apart from our bedroom. We spent a lot of time in there, actually all the time. Our bed was our sofa, our dining room table and our bed.

I became terrified of her, I wouldn’t leave the bedroom when she was there. If I was home and so was she, I wouldn’t eat or drink for however long she was there. When she was not there, I would run to the kitchen, I would be making a drink and watching out of our window the whole time to make sure she had not come home. If I was in the kitchen and I saw her car pull into the driveway, I would start shaking uncontrollably and my heart would pound. If I was making a hot drink, I would switch the kettle off as quickly as possible and run back to the bedroom. I would stay silent until she left. I felt like a prisoner.

There were times when I would sit in the bedroom, in silence, listening to my boyfriends mother and sister continuously talk about me. His mother had a habit of judging my every move anyway. She judged every action I ever made whether it was buying a new car, changing my job, what I ate, what colour my hair was and scrutinised everything I said.

MY MENTAL BREAKDOWN — 2017

In 2017 I was having a tough time at work, a job I was good at and had friends at, I was being bullied out of. I lost my job. I was being hurled abuse at whether I was at home or at work. My best friend cared less and less about me every single day and I was being replaced, I was being used also — it seemed as though she only ever wanted me to go to her home when she had something to gain from my visit.

I had a mental breakdown. I was self-harming, again. I would stare at bleach bottles and imagine myself drinking from them. I would cry for hours every day.

I would have panic attacks from the time I woke up until… I didn’t really sleep much either. When I did sleep, I would wake up in hot sweats, crying about the images that were flashing through my mind.

This led to…

AGORAPHOBIA — 2017

Agoraphobia is a fear of being in situations where escape might be difficult or that help wouldn’t be available if things go wrong.

I remember one day, my boyfriend came home from work and I went to greet him, he asked me to carry some things inside. I physically froze and found myself wanting to edge to the side of the path. I was shaking, my legs had become jelly-like and quite frankly, I was cacking my pants.

I visited my local GP Several times and each time after I had finished discussing the issues I was facing, I was ignored and I was asked whether I was booking in for my smear test or not, she didn’t listen to a single word I was saying. So, I travelled 100 miles to stay with my parents and see my old GP, he just said I had a vitamin D deficiency and sent me on my way.

Nobody listened.

I referred myself to therapy and had to wait 3 months to be heard, just for them to tell me I would need to do an online course that just gave me basic meditation skills, I had already been doing this. To add to what felt like torment, my therapist got swapped 4 times.

Whilst this was occurring, I was kicked out of my own house by my boyfriends sister. Yes, my boyfriend had to give me that news. In all of my years on this planet and everything that had happened in my life previously, I had never felt so alone and so unwelcome before.

I could not walk without aid, I could not move in the way others move. I have severe pains in my abdomen whenever I see a wide open space and my legs become paralysed and I cannot go out on my own because the likelihood of me getting stuck or falling over is extremely high.


From being financially stable, I am now unable to go out and get work leaving me with no money and large debts. From being independent, I am now unable to walk without assistance. From being a person with mild, controllable, anxiety, I was in the midst of a mental breakdown.

Anxiety has ruined my life, invisible illnesses have ruined my life and I guess this is my way of getting someone, anyone to listen. I don’t suppose that you care and why should you, I am practically a stranger.

The worst part of this all and what makes me feel like a horrible human being is, I wish I was in a wheelchair, I wish I had some form of disfigurement. I wish I had a problem that people could see.

If they could see it then maybe I wouldn’t have to justify and explain myself. All of the time.

So. Hello, my name is Kelly, I am 25 years old and I cannot leave my house unaided.

Thank you for listening.


[Just as a disclaimer — everything that has 2017 in the subheading is all within the month of September 2017]