27 vs 7

 Dear Diary, I made it to 27.

20 years ago my doctor were worried that I would not make it to 7 years old (my mum told me this, I vaguely remember a concerned looking doctor and terrible mashed potatoes). I have this picture from 19th December 2002. The hospital sent round some mascots to take pictures with child patients and hand out Christmas gifts. When I look at this picture, I remember watching a boxing match on boxing day and thinking that's what boxing meant. Or the doll I saw on my hospital bed when I went back to my room after taking this picture, it was pink.

It took about a year for me to be diagnosed. No one could figure out what was wrong with me as I lost weight. It's a growth spurt, an eating disorder, maybe she's pretending to get out of school. At 6 years old I was a pro at hospital visits, the routine of spending half the day in the waiting room, having a blood test done and being sent home.

I eventually met a doctor who cared enough to run one more test. It's hard to recal the details, but I do remember one day it was my last day in my local hospital and then I never went back. I was being referred to the Royal London Hospital in Whitechapel.

Over the years I have met many doctors and nurses. I can't remember all their names or faces. But there have been some stand outs over the years, the nurse who brought a damp sponge for me to wet my mouth because I wasn't allowed to drink water, the nurses who would teach me how to say please and thank you in other languages. There was a student doctor back in 2002, who would eventually become my primary doctor. Shout out to Dr L for taking care of me all these years.

I was diagnosed with Crohn's disease over Christmas 2002. The photo marks the first of many hospital stays, countless blood tests and investigations. I do wonder how many medical journals I am uncredited in, and if any med students wish for an autograph.

I had two photos from that day. One with Scooby Doo and (the one I still have) with Bubble. I haven't seen the Scooby Doo one for many years so I must have lost it at some point. Personally I liked and watched more Scooby Doo more growing up than PowerPuff Girls, but Bubbles was my favourite Powerpuff Girl.

The life a child patients is strange. Some days I feel like I have lived 10 lifetimes in 1, whilst running blindfolded through the a storm. I have experienced things that no child should have to go through. I don't remember a lot of things that have happened over the years, but I can remember how I felt. There is a quote from Doctor Who, No one can ignore the sound of children crying. I spent many nights listening to other children cry. I did a fair bit of crying myself.

Being diagnosed young has meant I missed out on many things, I don't recall a healthy version of myself to compare to. I was the sick kid in school who would take afternoons off. I never told my friends what I was going through. I was the kid with a strange feeding tube on her face. I was scared, blindsided even, by many things that were happening to me and at times could barely tell the doctors how I was feeling. I didn't know anyone like me and I often felt so alone.

It was the age of dial-up internet, and flip phones. There were support groups around but I was too young to know how to access them, and my grown ups weren't exactly tech savvy. My first phone was a Motorroler Razr which I got in 2007. The only place I saw people like me was on hospital wards. Not exactly the easiest time to make friends, when your puking your guts out.

These days finding other people with IBD is just a click away, you may even be watch them on TV (Any Abbott Elementary fans?). There are so many communities #spoonies and social media pages to meet other people like me. It's nice and I am a little envious too that I didn't have the same accessible support in my early days.

 

Having so many life milestones happen in a short period of time and over Christmas makes it hard to know when the best time to talk about my story. Do I mark it by the date on the photo, 19th December 2022 or the birthday I made it to? This year, I chose to mark it on my 27th birthday, another milestone, the start of my late 20s.

Many variations of this post have sat in my drafts and in notebooks for years. Everyone's IBD journey is very personal to them. There is a lot I want to say and some parts are easier to communicate more than others. The last draft before posting actually had the 2002 photo of me and Bubbles. But as I looked at it, I got so emotional I almost deleted this entire post, I am not ready to share it. After 20 years I'm not sure if I ever will be.

It breaks my heart every time. That smiling 6 year old, almost 7 years old, in her her blue butterfly pyjamas, doesn't know...

~J at 27