Lily's Long-Term Conditions

“I’ve had stomach issues for a couple of years now. My gastrointestinal tract moves too slowly and makes me feel bad. It has slowly gotten worse and I had to have a nasogastric tube put in in March. 

“As someone who already struggled with their mental health, I found developing chronic conditions really tough. I’ve always had a difficult time making friends because of my autism, but the beginning of my illness coincided with a move from London to Edinburgh, which has made things even harder. 

I already felt lonely but my conditions have definitely made this worse. I can’t often go to school and I have been bullied a lot because of this. I’m very academically focused so I find missing out on school really hard.

As a teenager in a kid’s hospital with a tube stuck to the side of my face I felt super out of place - until I met the ECHC team.

- Lily

“I try my hardest to do my treatments at home as my autism means I struggle to be in new surroundings and I find hospital stays traumatic. Sadly this is not always possible and I’ve been in and out of hospital a lot over the past three years.

“When I first went to hospital, I felt so isolated as everyone on my ward was a lot younger than me. As a teenager in a kid’s hospital with a tube stuck to the side of my face I felt super out of place. I ended up chatting to the parents instead.

“Luckily, I found out about ECHC’s Hub so when I’m in hospital I go there every day – even when I was in a wheelchair as I was so weak. I really enjoy chatting, making crafts and using the virtual reality machine with the charity team.

“They would also come and check up on me to see how I was feeling which was lovely especially after a tough ward round.

“When I think of my future, I see a blur. Nothing is certain, especially with a chronic condition as you never know what’s going to happen or how you will feel. Although I now have my tube out, I don’t know if it will stay out forever as things change every day.

“Although I’ll have my conditions forever, I find comfort in knowing that if I have to go to hospital again, the ECHC team will be there to support me and to help me have a more positive stay. My admissions would have been so incredibly different if it wasn’t for them.” – Lily

Young people like Lily already go through so much. They shouldn’t have to feel lonely too. You can help ensure children and young people are never alone by donating to our appeal today.