More Than Just ‘Imaginary’

More Than Just ‘Imaginary’

It took over four years to get my diagnosis of Crohn’s Disease. This might not sound like a lot but for a nine year old going through excruciating pain, both physically and mentally, every day seemed like forever.

This is one of hardest pieces of writing I have ever done. Perhaps this is because it is so difficult to express all my experiences and emotions over four years into such few words. To put it in four and rather kind words, my doctor was incompetent.

Back in 2004 when I was just nine years old I was suffering with extreme abdominal pain, diarrhoea, vomiting and stunted growth. As many sufferers may recognise these are classic symptoms of either Crohn’s Disease or Ulcerative Colitis, the two main forms of Inflammatory Bowel Disease. Both are chronic and both are incurable. So it was only natural that my family had a feeling there was something wrong with me and so took me to the hospital. This doctor supposedly worked as a consultant paediatric with ‘skills’ in toileting issues, chronic pain and fatigue. Unfortunately he still does.

In a word he treated me dreadfully. I have read his profile recently and it still states that he believes tests and investigations are rather ‘unnecessary’. He was very reluctant to treat me. I have to say that most of our appointments were spent going through poo charts. Any blood tests that we arranged he would ignore the results and pass my blood off as being normal.  One point down the line after much pain, ambulances and fighting, he put me on laxatives. I was already going to the toilet at least six times a day so laxatives were not the correct treatment for me. I just accepted it then, but now I know the truth.

What makes it so much worse is that he branded my disease as ‘imaginary’. He put it down to an ‘over anxious mother’. In reality I was suffering from an unknown serious condition and he just could not accept it. My mum was never over anxious; she was just doing what anyone would do for their loved ones, seek help. Unfortunately this help was not given in the right moral way.

Yes we all make mistakes as human beings but it is not acceptable on any level to belittle or insult someone. Plus his insults didn’t make any sense. How could all my pain be a result of someone else’s worry? The answer is it can’t be. My voice was muffled as I was not allowed to express my feelings to someone was supposed to be a professional.

After four years of fighting with my doctor, we had enough. We managed to get a second opinion. After an endoscopy and colonoscopy I found out I was suffering from Crohn’s Disease. My new ‘second’ doctor urged the ‘first’ accountable doctor to apologise. All my mum received was a half-hearted phone call. The scars will never truly heal.

One of these scars is the photograph below. It is taken in Gran Canaria at the time when I was undergoing the laxative treatment. I do not remember the holiday for its beautiful scenery but spending most of the day in the toilet. Every time I look at the photograph it reminds me of the struggle I went through, but also the amount of strength I have now have and the unwillingness to allow my voice to be silenced again.

Gran Canaria, April 2005:
‘Smiling has always been easier than explaining why I’m sad.’  (© 2014 IdleHearts)








The point of this article is not to rant or to bash this specific doctor. There are many doctors who are extremely supportive and some are even lifesavers. It is just unfortunate that I and many others out there have come across those horrible few. Some do not even receive an apology for all their pain.

No, the point of this article is to raise awareness for Crohn’s and Ulcerative Colitis, which are two very real diseases. So please do share this blog article. Also if you or your loved ones are experiencing any sort of pain and suspect something is wrong, do not let anyone else pass it off as simply imaginary. Speak out against them. You deserve to receive the right support and treatment you need to strive in society. You have the right to be happy. Do not let anyone take this away from you. I know I won’t.

Stay strong everyone and thanks for the brilliant support.

13 comments:

  1. This is heartbreaking what you've been through Jake but thanks for sharing it. You are a true inspiration.

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    1. Aww thanks so very much for your comment. It means a lot that people like you are so very kind and understanding. It is this which overcomes any negative experiences from the past. I hope you have a fantastic weekend.

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    2. Not a good experience for you at all. My first doctor told my parents I was just being silly and making myself sick. Only took a few months for me 2 change surgery but I was 18 then. Take care. Our illness still seems very misunderstood. I am 38 now. x

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    3. I am deeply sadden to hear that you were treated in this way. It is upsetting that our illness is misunderstood but hopefully one day will get enough awareness so many people will be aware of the conditions and consequently will be able to treat them with better understanding. All the best to you, have a great weekend and thanks for commenting.

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  2. That was a heartbreaking experience. I had felt what you felt that time. I was even called crazy by a professional doctor because she thought that I have a psychological disorder because all my results are normal ang negative. I know my self more than anybody else. So we seek for a second opinion and the truth was revealed. Sorry for my english.

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    1. That is really awful to hear that you were treated so badly. You are absolutely right, you do know yourself more than anyone else could. You sound like a real proper fighter so thank you for commenting on my blog. All the best to you.

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  3. By the way, I'm from philippines :-)

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  4. You certainly are a brave & inspirational young man! So sorry you are going through all this at such a young age. I hope that you are now getting the support & correct treatment! It took 7 years of me being fobbed off to get answers but I was a lot older than you & it was hard enough then to deal with. Well done for your blog & good luck xxx

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    1. Aww that is really kind of you to say. I am so sorry to hear that you went through horrible times as well. It is really concerning hearing how many people have been impacted by incidents like this. Hopefully with greater awareness others will not have to go through the pain we have been through. The doctor I have now is much more professional so I am happy with him. Thanks for your comment and thanks for sharing. You are an inspiration too.

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  5. Good luck for the future Jake,you sound like a very mature and responsible young adult,you will be an inspiration to many people who may have lost faith along the way due to unproffessional treatment,keep up the good work xx

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    1. Aww that is so very nice of you to say. Comments like yours keep me writing. If I can help at least one person then I know I will keep on going. I hope you have a fantastic weekend, and all the best to you and your loved ones.

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  6. Thank you for your story, it is really hard to explain this horrible disease and they did me the same way the chief doctor came into my room and told me he don't know what's wrong with me, went to a different hospital and they said I have Crohn's disease

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    1. Thank you for your kind words Kali. It is upsetting to think that the diagnosis process can at times involve belittling our hidden disability. Thank you for sharing your story.

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