When It Was Time for Me to Move From the Children's Hospital to the Adult Hospital
I cannot tell you how much I dislike being an adult within the health services. I thought growing up would be a good experience, but living with illness and having to move from children to adult services is really hard. I always knew I would have to move from children to adult services and I had no idea what to expect. I didn’t think it would be such a lonely and scary jump.
At 16, I went from being surrounded by bright walls, happy murals, play rooms and more, to four blank white walls. A big white room. I went from having frequent visitors and a parent staying with me every night in their own little bed, to watching my mom cry and sleep on the hospital floor, because after one of my surgeries she didn’t want to leave me at 8 p.m. when visiting hours were over.
I think back to every single opportunity I had as a child in the hospital — school, music therapy, chill-out zone, play specialists, celebrity visits. My hospital even had a slide. In the blink of an eye, it was over. Kicked out. No matter how much I long to go back, it will never happen.
My relationship with my family has changed because adult wards aren’t as inviting. They don’t have toys or a play room, or even a TV, and therefore my siblings no longer like to visit me.
Doctors’ rounds happen in the morning, when my parents aren’t allowed in. You’ll argue that I’m old enough to handle it, but that’s not the point. One of my parents has been in the know since the day I was born. They’ve made life-saving decisions for me, and they have all the questions. When I’m sick, my attention span isn’t great and medical jargon is a no-go. Most of the time, it ends up in arguments or serious misunderstandings, simply because a loved one could not be with me for those intense 15 minutes.
Now, spending time with my family when I’m in a vulnerable state has become a luxury. Visiting hours mean that I can no longer have a loved one by my side during the night. So, when all I want to do is clutch onto my mom’s hand because the pain has become unbearable, instead I sit up, lost in my bed, and listen to other patients in the hospital.
There is so much stigma around mental health and well-being, yet the adult world is stripped of life. We’re encouraged to lie there with nothing to do. To stare at white, clinical walls.
My heart aches the most for my friends who are going to go through this process. My heart breaks for the day the little girl I’ve known since she was 3 will be told that her parents can no longer stay with her. That her family cannot be there when she has her bedtime injections or sees the doctor in the morning.
My heart hurts for the 9-year-old who has just had surgery and recovered in a really beautiful setting, surrounded by people she loves. It hurts for the day she will wake up from a surgery surrounded by four blank white walls and people significantly older than her. For the moment she will be taken off her morphine and that night have no one’s hand to hold when the pain creeps in. A place where tears will not be seen and a voice will go unheard.
Unless you live through it you wouldn’t know. As a service, you don’t realize how much you are taking away from us. We have enough on our plates. We’re trying to grow up in the world and on top of that we have to magically, overnight become adults within the health services. I wish I could ask you to bring back our voices. Voices of the young. Truth is, it seems our voices never existed. We feel simply pushed to one side.
I am numb, because I used to be someone people could relate to, but now I feel lost. Lost with the system. I feel like I’m “just another patient.” I’m just a number.
Perhaps what you don’t know is that for someone like me, I’ve lived with this my whole life. Before you wanted me to be an adult, I was a child. I still am a child. A child to my parents. So, inspire, encourage and help us grow up, don’t just shut the door. Please.
Our time is now, because change has to happen now. Not only for ourselves but for the benefits it could also bring to healthcare services themselves. Let us represent and be heard. We live with this every day. We are experts and the future of healthcare must be experience and patient-led.