If you are living with a life long disease you are bond to have your share of unthought out even slightly hurtful questions thrown your way from time to time from well ….how do i put this nicely…. ill-informed? oblivious? unconscious? yeah lets go with unconscious, you are bond to have your fill of people asking you ” uncourteous ” questions about your disease. How do you deal with these questions in a considerate way? It may be hard to keep your cool at times but Remember these pro tips:
-Be considerate , I mean someone has to be! You always have to try and be considerate because they have know idea what your living with and unless they live your life they will never truly understand so try to be tolerant of others.
-Give great over detailed long responses, I like to respond in great over detail because i figure if they have the time to make a comment then they have the time to hear a long detailed response! and after that they are also less likely to ask you anything ever again.
-Have pamphlets on you at all times , I have started bringing pamphlets with me to hand out to the “less educated”, that way you don’t have to act all cheery while you respond to there imprudent questions!
-Do not be shameful! don’t let someones question or statement put you down , embrace yourself, you have this disease now buck up and deal with it! it is not something to be ashamed or embarrassed of.
-Use humour!..if you think someones question is dumb or insensitive then don’t be hurt by it use humour, for me being as sarcastic as possible helps! it will make them feel silly for even bringing whatever it is up in the first place.
Don’t get my wrong I have know problem educating someone about Crohn’s disease I believe people should be more forthcoming about themselves that way everyone can be more aware. But right now i’m talking about the more senseless hurtful things people say.
Okay time for me to demonstrate , I will go over some questions or statements i have had thrown my way about my Crohns disease and show you how I responded,
Q=Question S=statment R= my responses
( brace yourself, some of the fallowing questions/statements may have you questioning the intelligence of our society)
S-Oh you have Crohn’s disease? I heard about that! thats not a hard thing to deal with, like all you do is get the shits once in while.
R-…………here take a pamphlet.
S-One of my mom’s friends has that…I thought only old people got it.
R- No. most commonly Crohn’s disease starts in people between the ages of 13 and 30. So can you define the word old to me please?
Q- Can’t you just cure it by eating a special diet?
R-No…No you can not. That is frankly NOT true!!, Crohn’s disease is a chronic illness with no cure you may benefit by avoiding certain foods which make you feel worse or better that you as a specific person react to but if it were as easy as eating a “special diet” you wouldn’t have a quickly growing number of hundreds of thousands of people around the world suffering from this painful disease…………here take a pamphlet.
S-You don’t even look sick anymore, so it most have gone away.
R-Just because you look and maybe even feel “better’ does not by any means! mean that you are cured! this is a life long thing, you can be fine for months but come right back where you stared in no time. So no, be hide all this wonderful radiant skin, shiny full fluffy hair is a ticking time bomb.
S-Oh I know how you feel ..i had a stomach flu last week!
R-Oh really!? well i’m glad to hear that, Actually No you have know idea. A Stomach flu sucks but it only effect your stomach and may last a week at the most! Crohn’s can have many side effects raging form arthritis,Erythema nodosum…etc and is a life long life long ordeal…
( Side note to all! Crohn’s Disease is nothing like a stomach flu!!! and that has to be one of the most annoying things to hear someone say ever. Never tell some with a chronic illness that you know how they feel unless you have the same illness of the same verity and harshness. Just because you have had a flu which happens to have one or more similar symptoms to whatever disease someone may have you don’t know how it feels, trust me YOU HAVE NO IDEA!. Saying something like that fall’s under the same category as saying “Ya man I know how to drive…i mean like a never drove a really real car but i play grand thief auto all the time ya no say diff.” NO…just no. )
Q-Hey what did you do to your hair? whys it looking so thin?
R- Because I have been taking prednisone for months and every time a take a shower i get to see a bathtub full of my own hair when i’m done …but thank you for pointing that out right here in front of all these people.
(side note: which by the way happened a few month ago , I am not longer on that medication and have never been happier with my hair 🙂 “it happened around the time that picture was taken”)
S-I have a low case of A.D.D and I would much rather deal with Crohn’s disease then A.D.D. I mean all it is is a bath room problem.
R-…umm okay well A.D.D can’t be any fun i wouldn’t know , i don’t have it and I would never say I would prefer to have that but Crohn’s during a flare up can cause you to have a hard time with concentration so i wouldn’t imagine it being any better for you…read this pamphlet then come say that again.
Q- Your not sick anymore…stop taking that medication before you cause liver problems !!
R- To stop taking your medication is ones of the biggest mistakes someone with Crohn’s can make and people do it all the time. You never stop taking your medication NEVER people that do get sick again faster ,you are feeling better because of the medication! To stop taking your Med’s is like to take a crowbar right back into that same boat you just worked so hard to make afloat and use set crowbar to smash a new hole in set boat then sit and wait to sink again then start all over if you get the chance. liver problems are a concern but that may happen away so do not risk it.
Q-You haven’t worn a dress or shorts in forever, why not,!? stop with the sweatpants!
R- Because during my flare up I had big red bumps all over my lower legs from I think Erythema nodosum
(okay side note again I can’t for some reason remember if that was the name of what was causing the bumps but we will just go with it for now.) so I had “Erythema nodosum ” which caused big red bumps on my legs …after i started taking the medication the bumps went away rather quickly but they left bruises which three turned into some light bruise looking scares which to this day are still noticeable “well to me at least other people say they are not noticeable but anyhow” and I love sweatpants.
(…hurray! another side note!! I now wear dresses and shorts almost everyday. but still love sweatpants)
Q- Why do you take so long in the bath room?
R-Because I enjoy spending time in there. …..here’s a pamphlet.
Q-“Are you contagious!?”
R-Yes now get away from me…no seriously its not in anyway contagious.
(I’m not even kidding on this next one someone actually said this to me at school or maybe even while i was working..)
Q/S-Crohn’s ya thats a sexually transmitted disease, Who did you catch it from?
R-No…umm ya No. first of all Crohn’s is not in anyway shape or form a sexually transmitted disease and second of all I do not engage in set behaviour. Thank you…your an idiot.
Okay I could go on and on …and on, but i think that’s good for now, I have been asked some other odd things but I will save those for some other time, I just think people need to be more forthcoming with there disease, so others could be more mindful, Why have shame about it! I don’t understand why anyone would, be happy with who you are what you’ve lived through don’t let something you can’t fix make you feel shameful. Shame belong’s with those how have done wrong not those who have done noting but survive.
I have one last Pro tip for y’all …
-I like to say I am “Living with crohn’s disease” not I have crohn’s disease because Crohn’s is a part of me it will always be a part of me, I am not going to let it keep me from my life, from living MY full happy healthy life it will just have to come along for the ride.
I hope you enjoyed reading this rather long blog post and I do hope at least someone finds it helpful!
Thanks so much for reading!
The picture is of me last year taken during my bad flare up “notice the dark circles under my eyes, even the amazing Photoshop app and my sister phone could not fix them. the picture was taken with my sister phone (before she deiced to bring her phone swimming in the bathtub with her….)