Spouse doesn't understand.

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Apr 14, 2018
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My spouse doesn't understand why I am tired or don't want to do anything some days. She calls it the "I'm board excuse." We have been married 19 years and I was diagnosed 21 years ago. This has been an ongoing thing.

Any suggestions?

Thanks,
Patrick
 
I am sorry she doesn't understand. Has she seen results of paperwork from blood tests?
No she hasn't. I am bringing her to my next appointment and she will hear it from the doctor.

She has low iron levels so she thinks if she can go without napping, I should be able to.
 
How insensitive!! And you are married. I'm sorry but this is not a quality i or anyone else would like to have in a partner. I may sound harsh but either she educate herself on the condition or you eradicate her from your life.
Sending hugs and support your way.
 
I agree.When I was first diagnosed I was given leaflets and literature by the hospital and made sure my husband read them all.That was 12yrs ago and even now,if there is something in the newspapers or on TV regarding Crohns (which is rarely,I might add) I make sure he is aware of it.It's so easy for others to forget when we're sick,especially if it's been a while since diagnosis.Crohns is not something others can see.Most of us try not to whine so that partners and friends don't get fed up of hearing it.It's a good idea going to your appointment together and asking your GI to clarify things.
 
Every time I mention my condition to others including family they take note of it, but then quickly forget and are quick to place blame on me for being slow and lazy. Nobody understands this disease unless they are diagnosed with it or have some kind of health condition that creates an impediment. Healthy people just don't understand.
 
It sounds harsh but most people don't understand a thing unless they suffer it themselves. People's frame of reference is themselves. Some may change that but others won't. This is unrelated but similar but I have acne and people never take it serious because their skin is clear, so why isn't mine?

Your spouse should try to understand the nature of this disease, not only the symptoms/complications of it. I'm sorry I have nothing more to say but this is all that comes to mind.
 
It doesn't help that commercials paint the disease as strictly a bathroom issue. They forget about the severe fatigue that go along with it.

I am sorry that you guys are having a rough time of it. I hope having her come with you helps. I also hope she gets her iron levels sorted out. Perhaps that has something to do with her being short with you?
 
My sister doesn't understand either. I have been sick with UC for 21 years. As of a month ago I just stopped supplying her any information about my physical health, mental health or my finances. I am much more relaxed now and I feel free, happy and empowered. I have decided that no one is going to disrespect, dismiss or patronize me any longer. Being assertive means getting my needs met. I was just diagnosed with Crohns and I am not involving my sister in any of this. She is not an adequate support person whatsoever. I have to use my time and energy to help heal myself so that I can have a better quality of life. ( 🤐 oops, rambling again. )
 
My advice is:

Dont try to ever change the problem or argue about it, your situation is what it is, it does not needs any more explanation. There is just no point in it.

In a relationship try to go around the Crohn problem and show passion/love/caring in a way what you can afford to do. It does not needs to be physical activity just something that you are sure to be able to do.

Everyone shared a personal story so mine:
After 15 years of my diagnosis my mother keeps telling me that if i am feeling bad its maybe because i have a flu or something because that is what she can understand and handle in her mind. I just stopped talking about it with her, she had a bad relationship with my father so she just cant accept the fact that not just her marriage got ruined but the children of it (my sister has celiac) is actually having a disease which is "hard to understand". Years ago when visitors arrived to our house she insisted me to drink wine with them. Even she know that i was hospitalized twice due to stomach bleeding in my life..

People uncomfortable with their own life sometimes project their anger/fear towards others.

Gabriel
 
Crohn's is an invisible illness so its quite common for people around us to not understand how debilitating this disease becomes sometimes especially while flaring...
My friends always tell me that I look so healthy , they can't imagine how intense pain I ve felt so far...
My family tells me to chill and forget about my Crohn's and everything's going to be OK..
My partner is joking about my condition as he gets more frequently diarrhea than I do...
So, my only solution is to show them that its okay,not to feel okay everyday !
If for example they suggest me to follow them out for a walk and I dont feel like to due to stomach ache or because I feel exhausted , I make it clear that I need sometime for myself on my couch and I expect them to respect it. (They are free to join me in case they want to)
Set boundaries in your relationships.
Such sensitive health issues demand the proper understanding..
People who love us are supposed to be our caregivers not our judges !!
 
Crohn's is an invisible illness so its quite common for people around us to not understand how debilitating this disease becomes sometimes especially while flaring...
My friends always tell me that I look so healthy , they can't imagine how intense pain I ve felt so far...
My family tells me to chill and forget about my Crohn's and everything's going to be OK..
My partner is joking about my condition as he gets more frequently diarrhea than I do...
So, my only solution is to show them that its okay,not to feel okay everyday !
If for example they suggest me to follow them out for a walk and I dont feel like to due to stomach ache or because I feel exhausted , I make it clear that I need sometime for myself on my couch and I expect them to respect it. (They are free to join me in case they want to)
Set boundaries in your relationships.
Such sensitive health issues demand the proper understanding..
People who love us are supposed to be our caregivers not our judges !!

Can you talk to my sister 😕

I like everything you said.

My sister trys to buy my love ? I just got a check in the mail from her and it's not my Birthday or Christmas. I was not going to cash the check, but I need the money so I DID cash it. She probably feels sorry for me because I am poor. She wants to help me and this is the only way she knows how to do it ? It is in no way a hardship for her to give me money. But she is not a support person for me at all emotionally.

Everyone have a great week 🙂
 
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