Not much support from spouse

[crohns in blue]

Hey all,
If someone could shoot me some advice on my situation or some insight on their past or current experiences it would be great. I have been with my fiance for 2.5 years live together and have a 9 month old together. We are very much in love with each other and 9 out of 10 days things are good. When I have a flair up or general stomach discomfort she thinks im using my Crohns as an excuse or crutch to be lazy and lay in the bed for a few hours.
I want to find a way for her to realized its a little more serious then me wanting to take a selfish break from daily task.

Thanks for any advice.

 

[michaelearnest]

I went through the same thing and I can tell you its because they are not aware of what Crohns is and what it does to a person. You need to get her reading books, join the forum and see what its like from others. Are there any local Crohns support groups in your area? Take her to one to hear other stories.

 

[crohns in blue]

I'm not sure of any support groups in my area. Until now I have been pretty blind to my diagnoses Ive just been taking my meds and keeping things mostly to myself. Been doing that since 2009. Not good I know.

 

[michaelearnest]

Each person deals with it in a different way. Go to my Facebook page and like it. Check out my friend on there who is a deaf model with an Ostomy and her picture and that will give you inspiration. My page is to really concentrate on identifying soccer and athletes who are in hiding who need help with Bad Gut issues.

I hid from 1988 until about 3 weeks ago and went public with my illness. My screen name is my real name and its time for me to give back and help others.

 

[EDZEL]

I'm not sure of any support groups in my area. Until now I have been pretty blind to my diagnoses Ive just been taking my meds and keeping things mostly to myself. Been doing that since 2009. Not good I know.

I've been pretty much doing the same for the best part of 28 years, so you are not alone - I was coping with it (mostly) and felt that I didn't want to spend more time thinking about it than was strictly necessary to get through the day which kind of worked I suppose, but having now dipped a toe into the forums (this one and http://www.crohnsandcolitis.org.uk/content/home.asp ) I can see that there is so much support and information out there that would have helped me cope a lot better had I been brave enough to look for it!

Maybe you could just show your partner this website - I'm sure she probably doesn't fully realise just how debilitating the condition can be and will probably feel bad about having nagged you once she is better informed! My OH has known about my condition right from the start - he is very understanding even though I can see it frustrates him at times if, say, we have to cut short a visit because I need to find a restroom, or a journey takes longer because we have to keep stopping...

One of the immediate benefits of 'coming out' about my condition so to speak is that I have just sent off for a key which enables me to use any disabled toilet anywhere in the UK - most towns have them and sometimes they are the only ones open - but only if you have a key, from what I understand. I will also receive a card on which is given information advising shops, businesses etc of my urgent need to use their facilities if I am out and about and get 'caught short' as we say here in the UK, which saves the embarrassment of having to ask... not that that may be your problem of course, but I just wanted to reinforce your understanding of the benefits of getting involved with support groups/forums, and perhaps your partner's too...

Good luck and do let us know how it goes, won't you?

 

[michaelearnest]

I really wish they had the key and card here in Ohio

 

[EDZEL]

michaelearnest, it's truly shocking just how many local councils DON'T have any provision for IBD sufferers here in the UK, and sounds like its pretty much the same in the US too. I was horrified to read today that one of the train companies in the south of England plans to put in service trains that don't have ANY toilet facilities whatsoever on some of their routes - the NAAC of course protested but I daresay the train company probably ignored them - talk about living in the dark ages! I feel really sorry for sufferers living in that part of the country and don't doubt that it has made life very difficult for them as a result.

What it needs is more celebrities to support the cause, or even 'come out' if they are sufferers... not sure quite how likely the latter is, since IBD isn't exactly the coolest of ailments, is it - but considering that it is not that uncommon a problem in the western world such publicity can only help...

 

[Dunbar]

Information is key. If you want to break her in gently have her read the 'you might have Crohns...' it is light-hearted but goes right to the truth of the matter. And you, yourself will feel better for having read it. I know I did and do, I revisit it every couple of months to lighten the load. Laughter is the best medicine.