People don’t really take notice of “invisible” disabilities – Anise’s Story (16)

I was born with a complex congenital heart condition called “Tricuspid Atresia” which basically means that the tricuspid valve in my heart didn’t form. I also had holes in my heart which caused my blood to mix before being pumped to my body (I wasn’t getting enough oxygen).

When I was about 6 weeks old my parents took me back to the hospital as I had become to tired and weak to feed and I was just sleeping all the time, at the hospital they found out I had congestive heart failure due to too much blood flowing into my lungs.

 

I had my first operation when i was around 8 weeks old, in this op they put a band around my pulmonary artery in order to reduce the amount of blood flowing to my lungs and slow down the heart failure to keep me alive long enough to have my second operation. When I turned 1 I had my second operation, the Glenn Shunt. The aim of this operation was to redirect the flow of deoxygenated blood to the lungs by connecting the superior vena cava directly to the pulmonary artery. I had my third & final operation when i was 5 years old (Fontan Procedure). This aims to separate the deoxygenated blood and the oxygenated blood supply. This does not make the heart function normal, but it allowed me to grow and enjoy more physical activity. Since then I have had quite a few cardiac catheters in order to check that the pressures in my heart were ok and make sure that the fontan is still working, my most recent one being in October last year as I was becoming more out of breath and finding it difficult to exercise.

”This (The Fontan) does not make the heart function normal, but it allowed me to grow and enjoy more physical activity.”

This condition causes me to have less energy than normal people, and the best way to explain this is the spoon theory or energy project. A person with a normal working heart will have 20 spoons of energy per day, whereas people with half a heart would have only 10. Simple activities such as showering and getting out of bed use spoons of energy, meaning that we become more tired doing simple things which can make it difficult for us to continue on energetically with the day.  Many teachers fail to understand the impact this has on my life. As I have to get up really early and walk up hill to the bus stop to go to college, i’m left with little energy once i get to college to continue in the day, making it difficult for me to concentrate in long lessons. 

”Many teachers fail to understand the impact this has on my life.”

I love going to concerts but this is also quite difficult with my heart condition. I get out of breath extremely easily and this can ruin concert experiences for me if I am pushed over my limits, i will use the vamps on sunday as an example.

Once we were inside the venue I asked security about where the meet and greet was taking place and said I won’t be able to run up and down stairs because of my heart. They told me that it was downstairs but they have an escalator. Tanner (New Hope Club’s staff) sent us down the stairs to go to soundcheck and after soundcheck we had to go back up the stairs to go to meet and greet. We then had to walk around the arena and down the stairs to meet and greet. This took a lot out of me and I was really out of breath by the time we got to the room for meet and greet. Luckily I had time to recover as I was towards the middle of the line. I met New Hope Club & gave them all a LHM pin and told them my story, they were so caring, showed interest in the charity and asked me how I was doing which made me feel very comfortable in the situation. After the meet and greet I went over to security to let them know that I won’t be able to get back up the stairs as I was not feeling well after the walk from soundcheck to meet and greet, the security guard I told was a nurse and fully understood how I was feeling and tried to sort out a way for me to get back upstairs without being pushed and shoved by everybody else in the queue. However, her supervisor did not take notice of how I was feeling and simply left us in the middle of the room whilst people began crowding around the door. Another security guard who knew what was happening with me made everyone form a queue and took us to the front of it. My friends and I explained to the girls next to us what was going on and that we weren’t pushing in but they looked really unimpressed and I started to get anxious about the whole situation. When the security opened the door to let us go back into the arena the girls behind us ran forward, completely disregarding what myself and security had said, and pushed us out of the way to get back in front of us. I ended up running up the stairs and back around the arena in order to keep up with my friends and make sure I got a safe spot inside the arena. By the time we got into the pit I was shaking a lot and my heart was beating really fast and i was extremely dizzy and still today (3 days later) it’s painful for me to breathe because of it. Nevertheless I managed to enjoy myself throughout the concert, whilst making myself more tired in the process. However, I found it difficult to walk back up the stairs to get out of the arena and found myself pulling my weight up the stairs on the banister so i could make it back up the stairs.

”Even though you may not be able to see how somebody is struggling, it doesn’t mean that they’re not.”

This experience made me realise how people don’t really take notice of “invisible” disabilities and therefore didn’t understand why I was asking to be let up the stairs early, even some people that I have told about my condition completely disregarded it and pushed past me and it made me feel really upset and invisible.

Overall I would just like to say that even though you may not be able to see how somebody is struggling, it doesn’t mean that they’re not and you should be respectful towards everyone’s needs.

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