Helping Others Understand

[McM17]

I was diagnosed with Crohn's a month ago (12/12/12 what a day ) although I have been having problems for four years before that. I ended up taking last semester off of school because with the diarrhea and the anxiety and the concentration problems it was too much. I'm starting again next week at school and I'm a bit nervous about bathroom problems and such, but when I try to talk about it my family just says that it shouldn't be an issue, and that I seem fine. It gets really frustrating when they tell me that I should't worry about having an issue in public. I had a sibling start laughing and tell me to find a bush to go behind if I had trouble. How do you explain to people that it's a real, and potentially embarrassing, worry?

I did hide my problem for a long time because I was freaked out, so they didn't really know what I was dealing with until recently. After I got diagnosed I started telling them when I was uncomfortable and I have been told several times that I "seemed to develop symptoms quickly" after I was diagnosed.

 

[SarahBear]

Hi, McM17!

I'm really sorry to hear what you're dealing with. It is rough thing to go through.

A few questions: are you in college? Are you in the US or elsewhere?

It shouldn't be much of a problem for you to leave class if you need to. You might need to discuss it with your teachers, and you may need a doctor's note. If others ask why you leave so often, you can simply tell them you have a health problem and that you would prefer not to explain further.

Are you taking any medications?

 

[Susan2]

Unfortunately, our nearest and dearest sometimes have difficulty understanding the implications of Crohn's in our lives because they are used to seeing us coping. Talking those things through is one of the functions of this Forum, so keep in touch.

 

[Absentminded]

Hey,
Just wanted to add my support, I know how hard it is going to college/university when you have Crohn's.
I know it's from the UK (I'm generalising, but guessing you're from the US?) but I gave a copy of this information to my university tutors when I was diagnosed and they found it pretty helpful. http://www.nacc.org.uk/downloads/factsheets/LecturersCanHelp.pdf
I was also allowed to get extensions for deadlines if I needed them.

As for your family, it's pretty hard for anyone without Crohn's to understand what we go through, although we'd hope that those closest to us would be sympathetic. I know I've had family members suggest that I was putting on my symptoms or that I should change my diet and I'd be "cured" grrrrr. In those cases I have to say I just ignored the unhelpful comments (easier said than done) and gradually and slowly tried to educate them about IBD. I'm getting there........

But finally, sending big hugs your way!

 

[UnXmas]

I had similar problems when I first started getting symptoms. I was still in school then, but I wasn't diagnosed until a lot later. It was hard not having a diagnosis. I was told I had Irritable Bowel Syndrome which meant I didn't even have the claim that I had a "real" disease - Irritable Bowel Syndrome isn't treated as a legitimate cause for problems and isn't viewed as being anywhere near as severe as Crohn's.

I was terrified of having diarrhoea in public and having to leave lessons to use the horrible school toilets where you could hear everything through the cubicle walls. My intestines would make these horrible gurgling noises (not like the normal rumbles of hunger) when I was in a quiet classroom.

I did come to accept my illness though - but it took a while. By the time I went to uni I had learned some tricks. I used my uni disability centre to make sure my lecturers would allow me to leave the room whenever I wanted to. (The disability centre just sent an email to my lecturers stating that I had to be able to leave for medical reasons - they didn't tell them my symptoms.) I got bathroom breaks during exams too. If I'd made similar arrangements when I was at school I would have found it much easier.

If concentration is an issue for you, you may be able to get extra time on assignments. You usually just need a doctor's letter to show to whoever deals with such issues at your school - maybe your tutor if that's the set up where you are.

My family didn't understand my embarrassment either. I tried so hard to keep the symptoms hidden that they didn't realise how bad they were! As my illness has progressed it's become impossible for people not to notice, and I do get more sympathy now but I guess having to get worse in order to acheive that was probably not worth it!

I still find this illness embarrassing, but now if I do have something embarrassing happen, I don't dwell on it any more and I don't worry in advance.

It helped me to read online about others with similar issues. I saw that there were nice people, who had families that loved them and who were, for the most part, living active lives. I realised that I wouldn't care if one of these people had an embarrassing bowel incident, which made me realise that most people wouldn't care if I had one either.


Finding incontinence pads existed helped me enormously - I'm not sure if that's an issue for you.

And of course getting a diagnosis - or at least when I reached the point where doctors were realising there was actually something wrong with me other than stress - did make a difference, even though it shouldn't. It gave me permission to have problems. Rather than feeling I was responsible for my embarrassing symptoms because I couldn't manage stress well, I learned that it was caused by a medical problem and didn't reflect on my character - which of course should be true even for people with Irritable Bowel Syndrome, though doctors don't seem to treat it that way.

I think you will be able to come to terms with this as you get settled back in school. Do you have friends who know? Your family may well learn more with time too. Maybe showing them posts by others on this forum or asking them to learn more about your illness would be helpful? Just remember your family's perception of your illness is not necessarily accurate, and try to give yourself permission to be ill and, yes, to be embarrassed at times - it's a normal, natural reaction, one we all go through. The thing is to keep it in perspective.

 

[McM17]

Thank you for all the support! I'm going to school in the U.S. at the moment, hoping to move down to Canada at some point since that's where all my family is! I think once school actually starts I'll be better (I'm definitely a worrier...) and luckily for me the campus is small, and my dad has an office where I can stash things if I need to!