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Please help me help her

Hello everybody, I'm am writing this post with the hope of getting some advice on giving emotional support to my fiancé that is diagnosed with colitis proctitis.
I am not very good at giving her emotional support.

Our story started three years ago when we met and fell madly in love, at this point, she had abdominal pain pretty much every day and I thought I would be able to help her since I was just about to complete a bachelor of science in nutrition and food science.

We thought she was allergic to something in her diet, assuming gluten, doctors were definitely not helping and were not willing to help her get tested for celiac, and were not testing her for nutrient deficiencies. We went gluten free and she kindof seemed to get better for a while.
Things got worst, a new doctor finally suggested nutrient testing, a scope, and DNA testing for celiac, she was diagnosed with colitis, negative for celiac, and was low in iron and b12.
We continued the GF diet out of mistrust of the negative diagnosis and actually did some somewhat inconclusive experiments with gluten that still showed signs of an intolerance, she has been taking iron consistently, and self injects b12. We also cut out FODMAPS to her dismay.

My fiancé is in school and doing well enough there, I am our soul source of income and keep up to all house chores so that she can focus on school. I prepare her school lunches and do my best to keep up to her cravings while staying within a gluten free and low FODMAP diet.

The compounding issue we are dealing with is her chronic fatigue, she is feeling completely helpless in this regard and I am feeling helpless in trying to help her fight it as well.
I am finding myself incapable of providing the emotional support she needs to keep her level headed in spite of everything I do for her.
Our relationship is at risk because I am unable to support her fears of having additional health issues like her suspicion of narcolepsy.
My attempts to calming her down are being turned around as accusations of being insensitive and accusing her of not trying and are bring her down.

How can I show her the emotional support she needs when I am at such a loss myself?

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I understand I can't tell her that it's all in her head and that she isn't trying hard enough, I do not believe this myself but do end up sounding that way whenever I try to help her.
She doesn't want to live the rest of her life in bed and is depressed by the facts that she can hardly find the energy to get up to have a shower and fights falling asleep in the bath.
This weekend we fought because she beleives that I accuse her of making up her fatigue which I believe is the result of her body constantly healing itself, and we missed our opportunity to see a doctor, again.
She thinks that I am against her in this when all I want to do is help.
Hey there,

Wow. This is like a page out of my life...my fiancé does what he can to help me and it's great. However, if I had not gone to see a psychiatrist I don't think we would be where we are now ( coping better).

My fiancé is the only person I have in my life...And at times it is difficult for me to not unload all of my emotions and pain onto him. I got diagnosed with Crohns right before we both started our Masters.

So, I can only speak to my own experiences but the biggest thing that made a difference for me was having him being patient with me. Often he just listens and will hold my hand while I cry. I don't know about your fiancé, but when I'm upset I don't want to hear "things will get better" or "you'll be okay" or "it's not that bad". Really I just want him to say that he loves me and that he's going to be here no matter what.

Really, it seems like you are being very helpful- and she needs that!

Being in a relationship is difficult enough without anyone being ill. It takes constant awareness of another persons needs, emotions, etc. Just remember how much you love her and try to keep that in mind when she is struggling.

Cross-stitch gal

Staff member
Vancouver, USA
Unfortunately, this challenge of ours is a learning experience and I'm afraid that nothing stays the same. If you look at my signature down below, you'll understand. PrincessPaint is right. I don't know what I would have done without my husband while I was in my 2 year long flare. I know he too was at a loss at that time and all he could do was hold me while I cried. Even though you can't fix her, just hold onto her when she needs it.

I know you're not married yet. But, there is a spouses of Crohnies support group that I recommend you taking a look at. Here is where spouses talk about the heartache of seeing us sick and how to better support us.

Also, if your fiancee is interested. There is a support group for those with Ulcerative Proctitis where she can talk with those of us going through the same things she is. http://www.crohnsforum.com/showthread.php?t=68350 Just let us know. We're here to help.
She's lucky she has you to help her. I agree with Princess Paint, don't say trite expressions like "it will get better" etc. Those expressions make me feel like I am a failure if it doesn't get better since the cause of all this is within my body. I've blown up at my boyfriend sometimes when he is trying to be helpful and give advice. Men and women are different in how they communicate. Men feel they need to "fix" or offer solutions to the problems being discussed. Women don't necessarily want an analytical view of it, they just want to complain and vent. Listen to her, let her vent her problems and frustrations. Just being there and listening is what is needed. The extreme exhaustion comes along with the disease not being controlled. I doubt it is narcolepsy. If she got her UC in remission it will go away. I have had it during flares and it is like a chronic fatigue syndrome type exhaustion. You can't even get up to get a drink of water, doesn't matter how much sleep you get. She should be under the care of a good gastroenterologist. She will likely need to get on some medication. I know the medication options are scary but it is hard to live your life with these types of symptoms
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