Before I begin, I should declare my appreciation for the NHS as a UK resident. Yes, it’s a very stretched system, so things don’t always happen as fast as I’d like. I’ve had surgery dates cancelled and referrals that have taken forever. I have experienced negligence, but, I have had wonderful nurses, very expensive treatments and diagnostics etc. My life has been saved more than once, and I am not sitting here with a huge amount of debt… For that, I will forever be thankful!

Frustrations in primary care

Moving on. I find myself incredibly annoyed, angry and often upset when I visit a GP and I am not taken seriously. I haven’t had a regular GP for a very long time. I always end up seeing someone I have never seen before, who knows nothing about me or my disease history. 

They seem to begin with the assumption that I’m just some whiney patient. Probably because I look well, but as we know, as should they, that means nothing. Not only am I often not taken seriously, but I’ve had so many sweeping (and incorrect) statements directed at me. If I were someone else, I may just go away and believe what I’ve been told. It’s simply not good enough.

My IBD diagnosis

In 2007, I was diagnosed with IBS on the spot without even being given an examination and sent packing with some antispasmodics. Obviously, it turned out I had ulcerative colitis, but fortunately for me, that diagnosis came just one week later because my disease had progressed so quickly. A week after that, my colon was gone and that was the start of my UC journey. Many people have waited years for a diagnosis, often because a GP hasn’t taken them seriously.

I asked the community for their input, and a few of them shared their “before diagnosis” stories with me.

Diagnosis stories from the IBD community

“I was told I had norovirus before IBD diagnosis. I had had diarrhoea for a month. No sickness and only person in the house ill. I was losing weight but didn’t have much bleeding at that point.” ~ Kay

“In the week before I got my stoma, I was turned away from the docs three times because I just had a bug and it would go away on its own … Been having 2 weeks of diarrhoea. I went to the walk-in centre and got sent straight to the hospital.” ~ Jennie

“You should be happy loads of girls wish to be as skinny as you are… Before I was diagnosed and was very unwell and concerned I couldn’t put any weight on 🙄🙄” ~ Louise

“When I first had symptoms of my IBD, I was 5 months pregnant and 23. I went to the doctors repeatedly because of bleeding and weight loss and was told I was probably constipated which I told my GP I wasn’t and also that I was “too young” for it to be anything serious! With regards to my weight loss, I was asked if I had an eating disorder even though I repeatedly told the doctor I didn’t and I weighed less after the birth of my son than before I was pregnant, this carried on until my son was 5 months old and eventually I changed GPs and had lost so much blood and weight I was immediately sent to the hospital, where I had to have two blood transfusions and a colonoscopy finally revealed I had UC!” ~ Kelly

“Before I was diagnosed, I was told by a GP that I was faking my pain because I just didn’t want to go to school. My parents knew that was bullsh*t because school was my safe place.” ~ Stephie

“With my Crohn’s when several GPs were trying to diagnose the pain, weight loss, bloody diarrhoea, frequency, etc., one actually said, ‘it’s all in your head, there’s nothing I can find medically wrong’” 🤦🏼‍♂️~ Vernon

“You can’t possibly have Crohn’s, you are too young.” ~ Alannah-Jayne

“I was told I was too fat to have Crohn’s.” ~ Katy

It’s far too regular of an occurrence for my liking. I just wish someone would tell GPs to be more mindful of their comments and not to judge a book by its cover!