Partner not as supportive as I thought....OT?

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tigerb
Regular Member


Date Joined Jan 2007
Total Posts : 45
   Posted 5/19/2008 3:30 PM (GMT -7)   
During my last flare, I really believed that my husband was supportive and understanding. This was the first major one since being married. During an argument today, he raised (because he isn't feeling great) that 'certain people get all the sympathy when they are unwell'.  We work together, and I have to say my employers were really helpful last time I was off work for an extended period due to hospitalisation etc.  He also said that I had no idea how hard it was for him when I was off work people asing all the time how I was. He made me feel guilty for having UC.  He has often told me that I must take care of myself at work, not doing too many hours and stuff ( I must admit, I do try to over-compensate to avoid being 'labelled' as a sick person!)  I feel hurt and that he maybe doesnt understand the way I thought he did.  Am I being too sensitive?
pancolitis diagnosed 1986 aged 14
azathioprine
just changed from mesalazine to sulfalazine - back to mesalazine!!
omeprazole
 
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/19/2008 3:51 PM (GMT -7)   
I definitely understand how you're feeling. I've been with my boyfriend for three years, and when we met, I was in the worst flare of my life. One day, before we even started dating, I found an "Understanding Ulcerative Colitis" book in his room. At first, I was really embarrassed and then completely smitten because NO ONE, not even my own family, has ever tried to really learn about it that much.
He went to appointments with me, talked to me on the phone while I was doing my preps (I never allowed him to come over because I was too embarrassed, this was when I was still living with my parents), he's come to every colonoscopy or sigmoidoscopy and snuggled with me afterwards. It was just such a wonderful feeling to have someone so understanding about it.

Now, three years later, he's made the occasional unsupportive comment and it really does hurt my feelings. "I hate that I have to spend so much time in doctor's offices and hospitals and I'm not even sick" "I don't think UC is funny, don't make jokes about it" "It's like I'm dating an old lady, all you ever do is sleep and feel sick, and it's not fun" etc etc...

You have to understand that while we're the ones in all the pain, they have to sit by knowing that there's very little that they can do, and it must be frustrating for them. I know he cares about me and it hurts him that I feel sick, but sometimes I just want to say well I'm SORRY to inconveniance you, but you're not the one who has to live with this!! But in reality, they kind of do too. They have to watch us run back and forth to the bathroom, decline meals, fall asleep early, miss social gatherings, pay a ton of money for health related items/medicine, lose our sex drive, lose our happiness... It really does take a bit of a toll on them too.

I don't think you're being too sensitive at all; there have been many times when I've cried over the fact that I think I'm being a burden on everyone and it's even worse when they actually TELL you that. But it doesn't mean he doesn't care or love you or support you. Have you talked to him about your feelings?
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 5/19/2008 7:57 PM (GMT -7)   
To be honest, its just as hard for them as it is for us. We spend so much time feeling crap, and many of the medications we are on make us super-sensitive, that we don't stop to think what its like for them to watch the person they love so much, constantly upset/angry/sick/tired and even in hospital.

ediekristen has it right - "I've cried over the fact that I think I'm being a burden on everyone and it's even worse when they actually TELL you that". Believe me, I've also cried plenty over this one.

No one can be supportive 100% of the time, we vent to our partners/friends/family quite often. Sometimes they need to vent as well.

Finally, in the end - no one can understand what its like to have UC other then someone else with UC. Just the way it is.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 1x BIOCeuticals UltraBiotic 45 + 1x SB FlorActiv twice a day.


MitzMN
Veteran Member


Date Joined Feb 2007
Total Posts : 622
   Posted 5/20/2008 6:08 AM (GMT -7)   
Cut him some slack. It's kind of human nature to feel a little resentment when one person in a partnership/marriage gets all the attention -- even if it's for a bad reason! -- and you seem to be expected to always be supportive and uplifting about it 100% of the time. You can't even have a crappy day because your partner needs you too much. And besides, nothing could be as bad as your partner's difficulties -- right?

We all need to sometimes have a pity party, even in the midsts of someone who really has a right to have one. I remember having a conversation with a friend's husband, near the end of her struggle, about how difficult her cancer and dying process must be for him because he always had to be supportive, and everyone asks about her, never about him. He thanked me profusely for observing, merely observing, how tough it was for him and asking about him, since almost never did that occur. Once I acknowledged his wanting to feel sorry for himself a bit, he didn't need to feel sorry for himself anymore. Someone understood. That was all he needed.

Good luck.

Mitz
Sporadic proctitis since about 1985. Mother had J-pouch surgery 1983.
DX'd with clostridium difficile in 2000. Pred, two courses of Flagyl, then Vancomycin finally got rid of it. 2001 colonoscopy dx'd left-sided UC. . Treated with prednisone, Rowasa, Asacol. Asacol not working, switched to Imuran. Three small flares since in 2002, 2005, and 2007, brought under control with steroid and Rowasa enemas. Lap Chole performed October 26, 2007, after gall bladder attack in June, '07.
Daily meds: 100 mg Azathioprine and 225 mg Effexor XR (for chronic, longstanding depression), many vitamins and Primadophilus Reuteri


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 5/20/2008 6:14 AM (GMT -7)   
tigerb, I understand how you feel, it's awful when we feel the disease is getting in the middle of our relationships. I think sometimes our partners have a harder time than we do really grasping that this "thing" isn't going to go away after a few weeks, months or years. And they get "compassion fatigue."

On the other hand I've found that I had to work to remember that to him, his problems and issues are just as important as mine are to me. So on my better days I always made sure to ask him about his world, his concerns and problems. After a while, I found it also helped distract me from how crummy my life was being at that time.

You're not over-reacting, probably right now you're both just tired of you being sick. Think of it as something you share, and talk about it that way.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Lonie
Veteran Member


Date Joined Feb 2005
Total Posts : 6447
   Posted 5/20/2008 6:42 AM (GMT -7)   
My late husband had UC before I did, and I feel like I'm a pretty compassionate person and would do the same as your mate does for you; supported him through doctor appts, colonoscopies, pretty much stayed at home, and of course...we too worked at the same place so I was constantly being asked how "he" was doing. And, as compassionate as I was trying to be, there was still a side of me that wanted to sulk too. It's just part of human nature.
 
When I was dx'd with UC about 2 years later (and no, it's not transferable!) I realized how rough it was for him. Not that I wasn't trying to know or understand what he was dealing with...you just can't fully understand until you actually have it. So I'm thinking; how about when you are feeling better to maybe just have a day that's all about him? Say, thanks, I appreciate your support and the love you give me when I'm not feeling so well. Sounds like he really is trying to understand, but just going through a tough time right now.
Carol

Remicade - will have my 21st infusion on April 17.
Vitamin B-12/Biotin, Probiotics
 
Co-Moderator for the UC Forum
 
 


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 5/20/2008 6:52 AM (GMT -7)   
I think you should talk it over with eachother, find out what the other needs. I always tried to keep it to myself........for me and my husband learning to communicate about what the other wants and needs it's an on going process but it has worked well.

not to say it's perfect...........it's not, but we work at it.
Beth, 32 ~ Major Flare Sept/Oct 07 ~ in remission
UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07
Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.
Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08
Prednisone 5mg 1xday (tapered from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalapril 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


TraciZ
Regular Member


Date Joined Aug 2007
Total Posts : 255
   Posted 5/20/2008 7:09 AM (GMT -7)   
It sounds to me like he wanted a little extra attention from you, because he wasn't feeling good. Maybe he was jealous?
Tressa 34 (F)
Not sure of my dx- currently UC, but with skip lesions. Bloodwork is inconclusive for UC & Crohn's. Colonoscopy shows ulceration in terminal ileum and descending colon
Colazal 3X3/day
Lialda upped to 4/day,
Colazal 3X3/day
Phosphatidylcholine 4 (420 mg capsules) once/day


Bigphule
Regular Member


Date Joined Dec 2007
Total Posts : 137
   Posted 5/20/2008 9:12 AM (GMT -7)   
TigerB, the best thing that you can do in this situation is to:
 
First, (and you've already kinda done it) is to vent your frustraitions to someone (other than your husband).  It is important to get the frustrations out in an environment that wont cause more strain. 
 
Second, set aside some time and really think about what he is going through, try to invision his side of things.
 
Third, talk with him about what you invisioned and what his comments make you feel like.  I put emphisis on "with" because all too often we talk "to" somebody with little thought of their input especially when we are upset.  (I'm not saying you do that just that it is a common thing that we as people tend to do.)
 
Fourth, make sure that he knows that even though his comments hurt you that you forgive him and love him.  Sometimes us guys need to be told that just like you ladies.  We may not always show it on the outside but when our lady tells us that she loves us nothing makes us feel better. 
 
 
Of course that is just my opinion.  Trust me I don't think you're wrong for feeling upset even angry about his comments, but I think the best thing to do is look at things from his point of view and then talk with him about it. 
Diagnosed UC 12/2007
 
 
Prednisone 15mg x 1/day ~ On going recent change 4/3/2008
 


expecting226
Regular Member


Date Joined Jul 2007
Total Posts : 402
   Posted 5/20/2008 10:01 AM (GMT -7)   
Everyone has given fantastic advice here. I'll just chime in with a few other thoughts.

I have one of the best husbands in the world. He is as supportive as he can be... but even he has his moments. It is hard to always be the caregiver. I think about how I worry about him when he has the flu or something. He says that is how he thinks about me all the time... especially when I am flaring. Imagine him carrying that burden all the time. It isn't fair.

Like Beth and her husband, he and I have learned how to communicate about my UC. As we've talked through things, I've realized (1) that he worries about me, and (2) who wants to hear about my bathroom issues all the time? How NOT sexy is that?

So, the way we deal with things is for me to tell him when I am really not feeling well. I don't talk about it unnecessarily. That helps me not to dwell on the disease, helps keep my attractiveness (this is my opinion - he has never said otherwise), and only worries him when it's necessary.
Proud new mom of a beautiful baby boy!
Current Medications:
- Asacol (4 pills, 3x per day)
- Rowasa (1 enema daily, as needed)
- Folic Acid (1 mg, 1x per day)
- Calcium (600 mg, 2x per day)
- Prenatal Vitamin (1x per day)


quincy
Elite Member


Date Joined May 2003
Total Posts : 30078
   Posted 5/20/2008 12:38 PM (GMT -7)   
Absolutely....TALK!!! ask him how he feels in general....and don't be defensive (which is just about impossible, however). It sounds as though he has his own issues, fears..etc, and you have to be equally as supportive as what you would have him do for you.

There are books such as Dr Phil's relationship rescue...might help get issues into the open and more easily discussed.

The best marriages require effort....we all have to make changes in our perspectives...very diffcult, however....but talking and clearing the frustrations is better than doing too much assuming.

Keep us posted as to how you're doing.

quincy
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


tigerb
Regular Member


Date Joined Jan 2007
Total Posts : 45
   Posted 5/21/2008 4:22 PM (GMT -7)   
Thanks everyone so much for your responses, I love this forum, just knowing there are people out there who understand makes it so much easier to cope. I do try really hard to avoid to make UC an 'issue', because I dont want to be a burden or a problem. I generally manage my feelings of fatigue and day to day feeling 'off' without even telling him ... I really feel I couldn't be more 'him' focused than I am. We actually talk more about his health concerns more than we do mine! It's almost as if because I have a 'label', and that I have health care professionals involved, I am 'sorted'! Quincy, you are so right... despite talking loads about UC, he still seems to have his own fears and issues. My husband had a really tough upbringing, and I know this has a major impact on how he views relationships in general. I don't want, or feel comfortable being in the role of being a sick person and try really hard for this not to be an issue. Thanks again all
pancolitis diagnosed 1986 aged 14
azathioprine
just changed from mesalazine to sulfalazine - back to mesalazine!!
omeprazole
 
 


ThePostmodernIrony
Regular Member


Date Joined Feb 2007
Total Posts : 344
   Posted 5/21/2008 5:49 PM (GMT -7)   
I was with my ex-girlfriend for half of year before i got uc and then 2.5 more years. she was incredibly supportive but i think it took a toll on her and it took me a while to realize that my complaining all the time didn't help her. you really need to have some other people to talk to because your significant other can't deal with every conversation being about how frustrated you are with your condition. eventually she told me that she couldn't see herself with me and said a bunch of stuff that was hurtful, one of which was that she thinks i let my illness hold me back - this was when she was barely talking to me because of her busy work schedule - and hadn't noticed all the changes and the ways i was taking control of my life in regards to the condition. so it drove me over the edge and made me really angry. i got the full time job i had been working for and have really gotten somewhere with my life situation despite that. it did teach me that it can be really tough on a relationship having u.c. i have dated and always keep in mind that my health and surviving must come first right now. i have learned from it and now understand how i can be less of a burden to the right person. sounds like your husband was extremely supportive in ways that i never had - i think that's awesome. he's probably warn out by it. can you do something relaxing together and take your mind off things - i know that's better said than done - but i just wanted to sympathize and tell you not to give up on him if he really is that good to you.
UC diagnosed January 05

Past Meds: Azasan (Imuran) - piercing chest pains after six days so tried different brand aka Azathioprine - morning nausea /didn't really help after more than 6 months, canasa (tried but got worse at the time - connected or not laying off for now)
Current meds: Asacol 2 - 3x, Aciphex (acid reflux), Remicade - 6 treatments, prednisone boo 10mg now tapering, multivitamin, caltrate 2x a day. probiotic (florasmart right now), astelin (nasal spray) as needed, allergy shots, fosamax

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