Crohn's Disease Forum » Support Forum » Vent Away » The world needs more crohns education.


10-12-2013, 06:52 PM   #1
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The world needs more crohns education.

Im so frustrated. Ive been in a relationship for almost two years now. Before we started dating I made it clear that I had crohns its a chronic illness it can make me a nasty person and i can get really quite sick, to the point that my last hospital stay lasted 4 weeks.
That was an indepth as i went before we started dating, over the course of the first year i wouldnt hide my crohns as such, i would carry a heat pack around with me id discuss my illness with his parents and sister in laws etc and hed be there hed listen, i never acted like i wasnt suffering from a chronic illness but i also didnt let it be my everything because at the time i was fairly healthy despite suffering a fair amount of pain.
Then this year i got quite sick, nothing major i didnt end up hospitalised but i kinda wish i was just to wake him up a little, i was having accidents followed by constipation where i was taking laxatives on a daily basis, i was in a lot of pain on a liquid diet all that lovely stuff that comes with pred like fevers and night sweats etc n i made it clear i wasnt up to socialising (which involved watching him and his friends get drunk) i wasnt able to eat out i was unwell i wanted to rest and be at home where i was psychologically comfy.
It didnt go well for a while, i had a massive blow up with him where i told him he had to educate himself about crohns about my illness and how it affected me, he needed to ask me questions and understand it if he was ever able to understand and support me and for this relationship to work!
He cried gave me a guilt trip that he hadnt tried hard enough hed make more of an effort etc and i waited and i waited and i waited for something to happen for one question yano. my mum said i was expecting too much too soon its been 3 months now and nothing, so unavoidably ive grown kinda distant. I am fed up of feeling fed up. on a daily basis i get messages such as "what you doing" every day. when i tell him my plans or anything its like he doesnt listen to me. i am so frustrated. so today i blew up big time. i am so angry that hes snapping at me for being unenthusiastic about our relationship but he cannot see that he has made no effort to understand my disease which to someone with crohns is like not making the effort to get to know me at all.
i made so much of an effort that he doesnt even see because he hasnt bothered, after our first chat i went camping of all things! but he doesnt get how big of a deal that is...
im so tired of justifying his behaviour and why i should cut him slack. i didnt have a choice but to deal with this disease so why the hell should i make it convenient for him just because he cant be bothered to educate himself!

im sorry for moaning i had to get it out there i dont know how much i can keep taking this. i understand a relationship is two ways and ive done my fair share of damaging it by pulling back and being distant but i honestly dont see that it was so unexpected from someone in my situation with an illness aggrevated by stress (am also still not yet in remission either!) i know i deserve more than this, and the fact that he no longer sees this obviously speaks volumes, i just hate being made to feel like this is my fault.

im not really looking for anything in particular from this post i just had to vent, it took me a long time to realize what i need to do, but just because i have crohns doesnt mean i deserve any less than someone who doesnt have crohns and we do not have to settle!
right now im thinking my life would be easier if i stayed single and selfish lol
10-13-2013, 10:08 AM   #2
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Join Date: May 2013
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You definitely deserve more. I went on a date a few months ago and told the guy before I met him that I had Crohn's. He actually read up on it before our date. That speaks
volumes. I wish there were more guys out there like that.
10-13-2013, 12:58 PM   #3
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In a way it makes me glad I have this disease because you see peoples true colours much quicker than you would with crohns!

There are good people out there but just because theyre good doesnt mean theyre cut out to deal with this which is a shame.

Im just glad it has made me as strong as I am! Even if I dont always kbow how strong I can be
With all this crap we have to deal with we certainly deserve something good! And this is something we can control!
10-13-2013, 03:36 PM   #4
Honey
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Hi there,
People do not always understand the suffering of Crohns. It is a fickle illness and treatment takes time to work, if it does at all. You can look good but feel rubbish. So do not be surprised if you do not always get sympathy. Finding someone who accepts you with your good and bad times is what makes a good relationship. Enjoy the good times and make the most of them. I do. I am currently on 8 weekly Remicade infusions, and am very well but tire easily. So, I hope all works out for you and you feel better soon.
10-13-2013, 06:05 PM   #5
mbishop
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Join Date: Nov 2012
Dating with Crohn's is definitely challenging. Unfortunately, like Honey noted, its hard for folks with no medical background to understand when there aren't "visible" signs of illness. Those of us that go to great lengths to avoid appearing sick or complaining can make it worse on ourselves from a perception standpoint.

Even with a partner that wants to understand, there is a lot of information on the 'Net on Crohn's, some of which is hard to understand (try explaining the non-linear relationship between CRP levels and inflammation), some of which is wrong (I just searched for Crohn's Disease Cure, and the top Google ad was for a quack product with the tagline "Heal the root cause of Crohn's Disease - without side effects"), and some of which requires first hand knowledge to understand it (try explaining "urgency" to someone who has never truly experienced it).

That said, if your significant other isn't even trying to understand, that isn't something that can be fixed and speaks volumes. You have enough to deal with, especially if you are cycled back onto prednisone, without having unsupportive people around you. I hope you find someone more supportive - everyone deserves that in their life!
10-13-2013, 09:35 PM   #6
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Thank you both. I have been diagnosed for four years now. I've been on almost med with bouts of remission but I usually have a pretty bad flare once a year the rest I learn to live with.
The last year has been difficult for me because I've had new symptoms that I wasnt used to and didn't know how to cope with then psychologically or physically. Im now retrying remicade but am still at loading dose stages.
Everyone is having a hard time dealing with me lately I understand they're bored of me being sick and it taking so long for me to "get better" I am bored if being sick and if I don't have the support or even feel like they're trying is more stress that I need to let go of.

It's hard but sometimes with this disease we have to learn to cut off what makes us sick a little like an alcoholic learning booze makes them ill. Si have to learn that holding my tongue and letting go of people who cause drama and stress makes me ill too.

Thanks for replying in a way I was venting giving myself a pep talk n hopefully inspiring others not to put up with being second best.
10-14-2013, 01:11 AM   #7
Honey
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Hi there
It is good to vent. I too shed a lot of tears behind the scenes,not only because of dealing with bad reactions to meds, but so called friends letting me down. I have dropped those who had a negative effect on me, not there for me in any way. I now have new friends whose company I enjoy, going to the theatre,etc. Keep up your interests when you are well enough. I am doing well now on 8 weekly infusions. I was not keen, but that is what is prescribed, when all else fails. Let me know how you are. Best wishes.

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