1) You can fix it with a diet
So many times when I tell people about my Crohns, I am hit with the words “you can fix it with a diet”. This annoys me a lot because if it was that simple then no one would ever be on medication. Everyone would be able to just eat this ’special’ diet (which they never tell you what it is, only that it exists) and everyone is different. What works for one person, doesn’t work for the next person.
2) You’re lazy, you’re always tired
One of the symptoms of the disease is the tiredness that you have. Having said that, many people don’t understand this and interpret you being tired all the time as you being lazy! This is one of the most frustrating issues for me as I would much rather be active and doing something instead of in bed sleeping. (There’s only so much youtube and Netflix I can deal with at one time) I love running a lot however since I get tired easy, I’m not able to do it too much otherwise I burn out. This is annoying because its the one place that I’m able to have time to myself and think about everything.
3) The only letters you get in the post are from the hospital
OMG POST!!! Oh, wait…… it’s just another hospital appointment letter At my hospital, I see 3 different departments; Gastroenterology, Dietetics, and Maxillofacial Surgery. I get at least 1 letter from each department every 3/4 months. Plus I get blood test forms and other miscellaneous letters. All in all – I don’t get excited about letters anymore because it’s always the same thing.
4) Having to write down all the medication you are on when filling out forms
Forms… Need I say anymore. These are the bane of my existence. Whenever I’m told to fill out a form I die inside a little.
Medication: arghhhh….. ghghghdghkjdngkjndfk
It’s not too bad now because I can remember what medication I’m on. However, it is a very lengthy process and used to take me ages to complete due to being on so many meds. I always get so many looks when filling this box out because people never expect me to write 7/8 different medications down.
5) The looks you get when you come out of a disabled toilet
Anyone with Crohn’s has experienced the dreaded runs. This is where you have to rush to the toilet and most of the time you don’t decide where you are going, you just go! Some of the time this can mean that you end up using a disabled toilet. I think everyone can agree that the looks you get from some people when you are leaving the disabled toilet are the worst. This is mainly due to the fact no one knows that you have Crohn’s since it is a hidden ‘disability’. I use the word disability word lightly because it is a very grey area whether or not Crohn’s is a disability. I for one don’t like to class myself as disabled because I can do pretty much everything myself without relying on someone. Although in other cases some people have to rely on another person with simple daily tasks. But when you got to go…. You got to go!
6) People claiming that they have the cure for it
There have been lots of people claiming that they have a cure for the disease. Although this may have worked for some people, it is not 100% proven and if it was then there wouldn’t be a charity raising money for research and tests. This is why it is a chronic disease. These claims have come from people that say that Cannabis Oil (CBD oil) has cured them. However many people are very sceptical as CBD oil is technically legal for medical purposes however the THC which causes you to get ‘high’ is illegal.
7) The difficulty of trying to explain what Crohn’s is to other people
Friend: How are you?
Me: Not very well, quite ill.
Friend: Oh, how come?
Me: I have Crohn’s
Friend: What’s that?
Me: well umm.. its an IBD
Friend: A what???????
Me: An inflammatory bowel disease
Friend: Huh… *losing interest*
Me: Its basically to do with my stomach
Friend: Oh…. Okay
8) Being in pain becomes normal
When dealing with Crohn’s, there are lots of pain symptoms attached to it that you end up just ignoring the pain most of the time because you get so used to it. This is however sometimes a bad thing because I managed to get myself admitted to the hospital. This is due to me getting so used to the pain that I didn’t realise that I was getting worse and got so bad to the point I needed medical help.
9) You can’t stop eating when on prednisolone
This is one of my favourite medications that I have ever been on… Prednisolone! Let me preface that I’m not normally a big eater, I only have a small stomach. Having said that, when you’re on Pred, you eat everything that is in sight. It makes you eat like an actual pig. I love it because I need to put on weight and it’s the easiest way to put it on since it doesn’t feel like you’re forcing yourself. You could eat 10x what you normally eat in a week and still feel hungry.
10) You feel like nobody understands how you feel
“Hey, why don’t you sleep more and you won’t be tired” “Why are you never in school?” “You’re faking it” These are probably the most common phrases that I hear. Many of the people saying these things have never heard of Crohn’s or don’t know what Crohn’s is. Even family who you have informed many times don’t understand sometimes. You feel like you are alone and you just wish it would go away.