Why I'm Grateful for My Children's Hospital Experience as a Young Adult With a Disability
I never thought I’d say that I’d come to love a hospital. I never thought I’d say I would want to go back to this hospital. I never thought I’d say I’m glad to have the experience of going to this hospital.
Great Ormond Street Hospital for Children (GOSH) is a world renowned hospital who care for sick children and help families cope with the stressful time of seeing their child ill. While I was able to see the amazing work the staff did while I was a patient, after being discharged and transferred to adult services I was able to see just how special this was.
Yes, I complained a lot. Yes, I spent a lot of time in tears. Yes, I swore to my mum I was never going back after each appointment. But my life was saved here. However much I shouted and cried at the staff, there were also times where we laughed, joked around, went on adventures round the hospital and set pranks on other staff members. Most importantly, no one gave up on me. Each treatment, each test, each procedure. All to help me get better.
I was referred to GOSH after a knee injury that never healed. I was sent to the pain management clinic where I was taught to manage my pain through medicines, pacing and physiotherapy. I attended groups and had psychological intervention; but my medical team remained clueless about the underlying cause of my pain. Following this, I was referred to rheumatology where my consultant was intrigued by my case. “A medical mystery.” I was immediately admitted to a ward for a series of investigations to find the cause. Yet after a week of tests, there was still no diagnosis. I’ve had every test in the book and three operations, yet there was no way my team could find to cure the pain I was in.
To this day, my pain is debilitating. I wake up in the morning unable to move. I limp down the stairs, feeling so sick I don’t want to eat. I force myself to try to do the activities my friends do, only to end up in pain and in tears at the end of the day. I’ve learned to accept my pain and manage it through the technique of pacing, but all I really want is for the pain to go away. It swallows my body, taking each part of it. It hurts to breathe. Sometimes I wonder if my body is just going to give up on me.
Even though the medical investigations that I had done came back with normal results, my team at GOSH never gave up. They always kept trying. Many people from outside the hospital told me I was making up the pain; I questioned why anyone would want this pain. I wouldn’t wish this on anybody.
The day I got a name for my condition was the best / worst day of my life. I had finally, after five years of darkness, been told the cause. My nervous system wasn’t able to regulate controls in my body like heart rate, blood pressure, fatigue and sensory simulation. It all made sense. The mystery was solved. But my mystery was incurable. Something which was never going to go away. I was going to be in pain for the whole of my life. And then I read it shortened my life expectancy.
The whole environment of GOSH made me love it. The reassuring staff who told me I was better than my pain, and to never let it stop me and also not to believe what I read up online. The doctors who research and investigate different treatments to try on me. The nurses who sat with me when I felt so lonely and scared; the ones who would help with my homework and do arts and crafts and do the can-can round the ward screaming at the tops of our voices. The crash team who rushed to help me when I collapsed in the corridor. The other patients I spent hours with playing Monopoly and Mario Cart. Sleepovers in each other’s rooms. The paintings of animals on the walls. GOSH doesn’t really feel like a hospital anymore to me. It is a safe place where I feel welcomed by warm and smiling faces.
No one wants to have to go to hospital, whether it is for themselves or to visit a loved one. But I want to go back to GOSH. Now that I’m 18 I had to be referred to adult services, however, I want to help. I want to give back something to a place that has improved my quality of life significantly. Therefore, I have joined the young people’s forum to help teenagers who are in a similar situation to what I experienced. I want people to know that not all hospitals have to be horrible places. GOSH is a loving, caring, safe environment. Every hospital should have this feeling.
People often ask me what my life would be like if I didn’t have the pain and health issues. Yeah, I might be able to run around, go out more with my friends, not have to worry that I’m overdoing it, not have to take medicine, get the chance to think about things that other teenagers think of, not have to admit I have a disability to university. But truthfully, I think it’s made me a different, better person. I have become more compassionate and able to understand others experiences. I have taken up new sports I previously wouldn’t have tried. I’ve made new friends at hospital. I was still able to sit my exams in hospital and go out with my friends. I have been through a lot, but I’m resilient and able to cope with many more situations than before. I’ve got battle scars and each one is kind of like a memory. I’m prepared for the future and I owe that to GOSH.
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Thinkstock photo by 1st Gallery.