How do you help your significant other understand?

I have the same problem with my guy. He insists on staying with me but he always feels so sorry for himself when I don't want to go out. He wouldn't want to go out either if he felt like he had to use the toilet a lot. I don't think they will ever get it, they are just self centered people.

It's easier to get your UC under control than it is to make someone else understand.

I'm still married, got sick after having first baby and already married, it's been hard on my hubby and even my kids but it's also been my kid's whole lives so they don't know me any other way, hubby adjusted when I never went into remission for decades and even now that I am I still get held back a bit by my IBS but I smoke MJ so we can do more things together but it's been so long and there's stuff that I just don't want to go and do with him (like early saturday morning auction) so eventually (like when you get into remission I guess) at some points things can get better but it's when things are tougher it shows you who the person is that you're with, some people can handle "sickness" of their partners better than other people can is what it boils down to and you can keep explaining it to them but it's not going to change the facts of how they feel our illness affects them and so be it, you can't change anyone, they either conform to your life long chronic illness or they don't and some last til death and others leave the relationship, like with EVERYTHING, there's no guarantees.

Offer to separate for a while if she's not able to function in the situation. We all have our limits.

Her life...your life. Actually two separate entities, goals and commitment abilities.

Couples counselling could help a lot with someone to mediate and allow you both to actually hear each other in another environment.

q

Dikid said...
I have that problem with my family- i still live at home and since i got diagnosed they think im faking or something, mom goes from calling me a hypochondriac to all concerned when my crp is 220 it drives me nuts! not that I wish they were in pain and had UC but I want them to realize how hard it is to go through what I am going through
and no I'm sorry I cant just get over it- Im still in it (except my brother-in-law with Chrohns he is great about it)

I'm sorry your parents are so insensitive. As if dealing with this isn't bad enough but being surrounded by people who make you feel like you're some kind of phony liar is really the kicker. I sometimes wish people could live with this for a few days so they could understand what we go through. I guess a few days probably wouldn't do it because it would end and they would believe ours would end eventually too... but we know it doesn't.

If you were healthy when you met your partner and shortly after got UC then you are a different person and it's understandable that they don't understand or like what has happened.

Family members? No excuse for not accepting your disease and it's limitations. But the saying goes "you can pick your friends, not your family".

Partner/spouses: it takes time for them to understand because we UCers rarely moan and groan and complain constantly so our disease is abit invisible. We look fine so tend to get treated as if we are fine. Took my husband quite a while to "get it" and then when I got better had to re-learn things. Not easy.

Friends: If they can't accept my limitations they cannot be my friends. I'm willing to accept theirs (except non-acceptance of course).

kiptyn said...
I'm being funny, but not completely, when I ask have you let your girlfriend see what's in the toilet? Has she smelled the bathroom after you've used it during a flare? When I'm flaring, it's disgusting. I can't imagine anyone not taking it seriously.

No, I tend to want to be alone when I'm at my worst. But she's driven me to the ER twice, accompanied me to doctor's appointments, picked me up from colonoscopies, and watched me take close to 30 pills a day and barely eat for months at a time. Compared to my activity level before (I was a runner, Crossfit athlete, chapter leader of a local nonprofit, etc...), it has to be clear that I'm a shadow of my former self.

On Valentine's Day, my symptoms were so bad that I fasted for 48 hours beforehand and wore a just-in-case diaper to take her to brunch-because nothing says romance like your date wearing a diaper and popping Zofran like candy. I couldn't eat, obviously, and shared a very awkward chat with our server who clearly thought I had an eating disorder. I try, but fun stuff isn't fun to me anymore; it's just days of preparation, mapping bathroom locations, and trying to hide panic attacks. It can't be fun for her, but as you all know, it's a little worse than not fun for me. I think that UC is going to end a relationship we spent 5 years building.

L Rachel - Can you be sure it's the UC causing your symptoms? It's just that virtually clear colonoscopies shouldn't result in severe UC symptoms. Have you had small bowel tests done?

NiceCupOfTea said...
L Rachel - Can you be sure it's the UC causing your symptoms? It's just that virtually clear colonoscopies shouldn't result in severe UC symptoms. Have you had small bowel tests done?

Honestly? No. I also have a rare genetic disease, type SDHB pheochromocytoma, which causes adrenaline-secreting tumors that are often malignant. I've lost half of my bladder and one kidney to 3 tumors, so everyone's first guess was cancer. But I'm scanned every 6 months, and there's no sign of tumors anywhere.

I've been tested for parasites and infections multiple times. I've tried an elimination, the SCD, and FODMAP diets in case I'd developed a food intolerance, SIBO, or IBS. None helped.

Endoscopies have shown evidence of chronic gastritis and I recently completed a gastric emptying study that indicated that I have more rapid than usual gastric emptying, which may be why I throw up a lot more often than the average UC sufferer. I haven't ruled out a missed Crohn's diagnosis either.

The only medication I've responded to at all so far is prednisone, and even that didn't eliminate urgency. I am now on my fourth gastroenterologist and he's scared to put me on anything stronger than a 5-ASA because of my improved colonoscopies and the fact that I'm already at an increased risk of developing cancer. If I was positive that surgery would solve the problem, I would have already had it done. Instead, we're going through a lengthy process of making sure that every single drug or lifestyle change below Imuran is ineffective.
I understand the rationale, but in the meantime, I have no quality of life.

I'm sorry you are going thru such a hard situation
I agree with ipoop about traveling to see a specialist
What region do you live in? There are some hospitals that are exceptional and may be able to give you more direction

L Rachel said...
Honestly? No. I also have a rare genetic disease, type SDHB pheochromocytoma, which causes adrenaline-secreting tumors that are often malignant. I've lost half of my bladder and one kidney to 3 tumors, so everyone's first guess was cancer. But I'm scanned every 6 months, and there's no sign of tumors anywhere.

Jeez, that's rough :-/ Fingers crossed for you you don't get any more tumours.

But I still think it's a good idea to take a look at your small bowel. You mentioned Crohn's; it's a possibility (although I really hope that isn't the case...).