Not having a diagnosis: Becca's story

By Becca (she/her)

Hey everyone!

So, this is my first ever blog so bare with me on how well I do! I’ll start off with telling you a bit about me. My name is Rebecca, I’m 17 and I’m from Leeds. I am currently in college doing a level 2 media makeup and hair course. Pretty easy. Kind of liking it, kind of not. Not exactly been easy to do a practical course while the Covid-19 is about! My favourite things to do are hanging out with the boyfriend (when he’s not being annoying!), doing my makeup (I love doing this! I make fake cuts, make myself look scary, turn myself into a zombie and all sorts), watching Netflix (Fresh Prince of Bel Air is the favourite!), and anything crafty. Currently addicted to colouring therapy books!

Let’s talk about my medical history which is always a fun conversation haha! In May 2003 I had a major Floppy Larynx (supraglottoplasty) operation. I had this because I had floppy tissue above my vocal cords and it used to fall into my airway as I breathed in. So I had this removed when I was only 5 months old. In September 2003 I had a Ladd’s Procedure. I was only 9 months old! I had a twisted bowel and different parts of my insides were in the wrong place (For example, my appendix were under my ribs). I was the third person ever to have a Ladd’s procedure done by keyhole surgery! Unfortunately, because of how twisted my bowel was they couldn’t put my bowel exactly how it used to be so now I have a very unique bowel that isn’t the same shape as everyone else’s!

This is me when I had my Ladd’s Procedure. (September 2003)

Ever since I was a baby, I’ve had multiple health problems. Growing up I suffered massively with acid reflux which resulted into a couple pH studies. I was in and out of hospital with multiple endoscopies. I’ve had multiple different tests, too many x-rays and ultrasounds to count. Growing up was really hard for me. I missed out on most of my education. I suffered with chronic stomach pain which let to many months off school every year. No one understood why I had such bad stomach ache. I couldn’t go to the toilet on my own and ended up constipated many times. The doctors couldn’t find out why I kept being constipated and why I suffered with such bad pain. When I was younger I got diagnosed with dysmotility. This is when my body takes a long time to digest food. A lot of the time doctors used to put the pain down to that because they couldn’t find anything else wrong with me. Eventually they said I had chronic constipation but didn’t know why or what causes this. In August 2017 (after many years of fighting for a fix) I had an ACE Procedure done. This is when they insert a tube into my bowel which allows me to put medication through the tube straight into the bowel and helps me go to the toilet and eases the pain. This isn’t a permanent fix. The tube itself has caused me many problems including many infections. It’s not easy at all.

I’ve not had an easy ride with the NHS. I’ve actually had quite a bad experience with it. Growing up I had many doctors telling me that the pain is all in my head or that I’m making it up. It got to the point where I started to believe the doctors that maybe it was all in my head. Many times I’ve had to insist to doctors that there actually is something wrong with me. It was hard, I felt like I had to defend myself all the time that I was actually in pain. It caused many breakdowns for me because I hated feeling like no one believed me. It wasn’t just the doctors that didn’t believe me, my “friends” didn’t either. Because I don’t have a diagnosis, an easy label to tell people, my friends didn’t believe me because I couldn’t explain to them what was wrong. Every year when I was off school there was a new rumour on why I was ill. 1 year it was that I was pregnant, another year was that I had broken my back and another year was that I had cancer. Then when I eventually went back to school people said I was “skyving” or I was “faking it” or that I was just an “attention seeker”. I actually got called an attention seeker very often. No one believed me that I was really poorly. It left me very lonely and I didn’t have that many friends.

Not having a diagnosis is such a difficult thing to live with. It’s massively affected my mental health. I suffer with depression and anxiety. It made me have such low moods, I have major trust issues now, I struggle making friends because I just feel like they’ll leave me like everyone else. You may think that it’s silly that not having a diagnosis can cause all this but it really did. Not having a diagnosis ruined my life. I spent most of my life lonely, in pain, having to fight my corner, missing my education and depressed.

Not all of it was bad though, I met my amazing psychologist who has helped me change my life for the better. I joined the hospital youth group which led me to make friends who know what it’s like living with a medical condition. I joined the hospital Youth Forum which allows me to make the hospital a better place to be and help younger people like me. I also met my amazing boyfriend through doing the work I do with the hospital and without him I wouldn’t be where I am now.

You see, not having a diagnosis is not always bad. Yes it’s hard. Yes it has ruined parts of my life and yes I would always prefer just having a name for my illness. But without it, I wouldn’t of met the people I know now. There will still be challenges ahead of me but I’m lucky to be where I am now.

Lots of love.

(Originally published 26/04/20)