Launching ‘My Chronic College Life’ – Josh’s story

‘My Chronic Career’ has been hugely successful, showcasing a growing range of illnesses and experiences of people in work. I’ve expanded the questionnaire to include some new questions and now, adapted it for those in school or college.

Your experiences are important. There are other people, newly diagnosed, going through what you did, and feeling alone. These interviews aim to help their friends and their school /college to understand their illness. It helps everyone understand that it isn;t just one person being different or awkward – it is all of us, hidden away, out of sight, but painful, debilitating and embarrassing.

I’m delighted to announce that Josh, from the UK is my first ‘chronic college life’ interviewee and his experiences are below.

If you would like to share too, you may do it anonymously if you wish, just contact me with your email address.

1. Please tell me a bit about your medical ‘history’
Started out, almost one year ago, I started feeling sick when I ate, but I just ignored it. My mum noticed I started losing weight – so she forced me to go to the doctors, where they weighed me weekly for a few months, then decided I had to see a GI. When we arrived he said he was 90% sure I had Crohn’s Disease, but wanted to be sure, so I had to have a colonoscopy in Birmingham where they confirmed the diagnosis.
2. Please give an outline of your school /college ‘history’
When first getting symptoms I just gritted my teeth and bared it for a few months, then a couple of months later I started getting more ill and attending school less and less frequently. I have been having home tutoring for the past couple of months and have even taken 4  exams at home (physics, biology and electronics)!
3. Did you know about your condition before you were diagnosed?
When I first started getting ill me and my mum were googling symptoms to try and work out what it was. We did come accross the wikipedia page for ‘Crohn’s Disease’ but did not read it and did not think that could have been a possibiity as I had none of the main symptoms (diarrhea and nausea).
6. How did you find out further information about your condition when you were diagnosed?
Well originally my doctor said google it! which was not the best idea, but we did so, and found some useful information, but also some bad/scary! information!
7. Finding information is different now with the internet, which sites do you find useful interms of information / support and advice about your condition?
8. What is your top tip for schools/colleges – what could they do to support people with yourcondition?
Ii think the best thing is for schools and colleges to educate fellow pupils about the disease, so they can be more understanding.
9. What is your top tip for students with your condition?
If you aren’t feeling 100%, don’t force yourself to do any work/exams that you may regret. there will always be time to resit later on when you are feeling more up to it.
10. Thinking about friendships and having your condition – what do you find / have you found most difficult to manage / cope with?
I think my friendships have improved as they know what disease I have and how it can affect me, so are more sympathetic and more friendly about it.
11. Thinking about having fun and having your condition – what do you find / have you found most difficult to manage / cope with?
I have tried to have fun and do as much normal stuff as other people.some things, for example going to the local theme park on a school trip obviously wouldn’t have been a good idea, but as long as its not too rough/dangerous and your feeling up-to-it – go for it 🙂
12. Thinking about your life, what do you do differently because of your health condition?
I think the main thing I do differently is think more about transport/how much walking is involved in certain activities, for example checking to see how far I would have to walk to get to a specific destination, or how far away the local toilets are!
13. Do you think you have developed any personal skills or qualities as a result of having an your condition? (I for example have encyclopaedic knowledge of public toilet locations!)
I think I have become more social and better with people, especially after spending 5 weeks in hospital at only 14 years old (and spending my 15th birthday in there!!)
14. What advice would you give people who have just been diagnosed with your condition?
To not freak out about it, thousands of people all accross the world have it, and lead normal day-to-day lives. It would be good to speak to someone with the same condition personally to answer certain questions you may have.
15. What advice would you give to the family and friends of someone who has just been diagnosed with your condition?
The best way to help someone with a condition like Crohn’s is support. as long as you are there to support them through whatever they may go through, they will always feel like there is someone there for them.
PS Josh did fantatstically well in his exams, he got A,A,A,B! Well done Josh and best of luck for the future.
If you would like to share too, you may do it anonymously if you wish, just contact me with your email address.
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