Loved ones don't understand

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jessaccount22
Regular Member


Date Joined Feb 2010
Total Posts : 21
   Posted 2/14/2010 7:47 PM (GMT -7)   
My husband doesn't understand me. He thinks i'm losing weight because i choose not to eat. I end up hospitalized for days and he thinks it's something I did that got me there in the first place. He doesn't ask me how I feel. Instead, he asks, well what did you eat to make you get sick. Your not taking your meds, which i am religiously. He goes out and eats McDonalds, Pizza, tacobell everyday. I don't like junk food so it doesn't bother me. But when I make homemade soup for myself it bothers him because he doesn't like it. RRRRR I"m so upset. I'm starting to believe that i'm just making excuses for myself. I'm a full time student, 5 classes plus 24 hours of clinicals every week. When i go home i have to cook my meals. Study, study, study. Yet he thinks that i have an easy life... I"m tired, so tired. I can't eat a regular meal and I can't slow down for once because i could get kicked out of the program. As i type this I cry. I ask is this how my life is going to be forever? If it is... I don't want to keep going:(

sammies
Regular Member


Date Joined Feb 2008
Total Posts : 493
   Posted 2/14/2010 8:18 PM (GMT -7)   
I've been through the same thing and several times. Please, please get some support from a source other than your husband--parent, sibling, good friend, counselor, clergy, doctor? don't go through this alone--it is difficult. While we might think it logical that the person who vowed to love us "in sickness and in health" will be able to support us, often, they cannot. Sometimes, those who love us cannot bear to see us in pain and just don't know how to react, respond, or help--so they lash out in anger. They want to solve things for us and get so frustrated that they can't. It's easier to pin blame on us.

I was hospitalized three times this fall for dehydration. While we have a really good marriage, my husband was of very little help.

He was so scared. Some people know how to deal with the sick, how to be compassionate, and some don't. My husband of 14 years, God bless him, is learning SLOWLY. I have had this disease through our entire relationship and he still doesn't really "Get it." He tries--goodness he does. He hates hospitals and is frankly scared, unnerved by all things medical. I turn to my brother for doctors' visits and my sister if I need some "babysitting." My brother knows to drop me off at the door of a building and to walk slowly with me. My husband is just finally learning to ask if he can drop me off, bring up the car, or help me up the stairs.

The second time I was hospitalized, my husband wouldn't leave work (!!!) so my mother took me in. A few days later, when he brought me home from the hospital, the nurse told him to watch out for me and help me to prepare food, get around, etc.. I told him what I wanted for dinner (Broth and bread) and went into the bathroom. Heard the microwave going and fridge opening. When I came out, he was sitting in front of the tv eating HIS dinner! we laugh about it now--but he was in serious denial. He's just not a natural care giver.

The last time I was dehydrated, I hadn't eaten for days. I was vomiting and seriously ill--almost incoherent. My husband was screaming, yelling, swearing at me to eat--4 am. "When are you going to BLEEPING eat?" Finally, he called my parents (I am 38) who advised him to either try to get me to a hospital or call an ambulance. My parents became my stronghold during those weeks. My aunt and uncle came to the ICU more to talk and support him than me (ha!). He just didn't understand--finally, the docs told him it wasn't MY fault. There was nothing I could eat or drink to get ahead of the dehydration. Maybe he began to understand it wasn't his fault either.

We are doing well now. Communication is still tough but we've been through 2 very very rough years. My co-workers seemed more supportive and interested in my health than he! In these last 6 weeks, he really couldn't face my TPN but he was helpful in other ways. I'm learning how to stay positive and how to turn to others to help and he is learning how to listen and how to take in/digest it all.

PLEASE PLEASE get some help--do not suffer alone. I wish you well and am sending positive, healthy vibes.
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; TPN, propranolol and xanax; anemia of chronic disease


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8550
   Posted 2/14/2010 8:24 PM (GMT -7)   
As I read your post one word sprang to mind: "divorce."

It's drastic, and I wouldn't take that as the first course of action. But in all honesty, your husband sounds like an underminer. Do you really want to live with somebody who undermines your self-confidence, sense of being able to cope, etc. for the rest of your life? Would living on your own be worse than living with somebody who belittles you and puts his needs above your own?

This is all presuming that he can't/won't change, of course.

jessaccount22
Regular Member


Date Joined Feb 2010
Total Posts : 21
   Posted 2/14/2010 9:09 PM (GMT -7)   
As I read your post one word sprang to mind: "divorce

Well, he admitted to me that he can't click with me. He wants to stay with me so that i could get my meds because thru him i get ins. I need to finish school first is what he told me and then we figure out from there. We have thought about it. Sad, which makes it hard for me to wake up every morning and continue going to school.

As for Sammie I'm glad that you have learned to cope with this disease thru family. Your husband is trying. And i get the part about some men just not being natural care takers. Thanks for the advice.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 2/14/2010 10:03 PM (GMT -7)   
Hi. I am the caregiver, my husband is the one with Crohn's. I had a very very very tough time with his diagnosis. Yes, I know we all agreed to "In sickness and in health", but most people including me expect the in sickness part to come later in life. Unfortunately for people with Crohn's, it affects them in the prime of their life - it isn't an illness associated with age. You know, I expected the usual stuff, high blood pressure, high cholesterol, arthritis, maybe having to take some meds, needing maybe 1 surgery in life to deal with something, maybe even God forbid, the big C in old age. Crohn's was completely unexpected and unwelcome.

I think it hit me really hard because the Crohn's and C-diff landed my very healthy, very fit husband in the hospital for 45 days, where he lost so much muscle, and became a shadow of his former self. It really really scared me, and I wasn't mentally prepared. I'd never before faced chronic illness, something that can strike at any time, something that hangs like the sword of damocles over your head, and can fall at any time. I felt completely out of my depth, and for a while there, it was all I could do to stick by my husband I love so very much. Not that I didn't love him, I did, and still do - but I couldn't watch him suffer, and it seemed that there was nothing I could do that actually helped . . .the surgeon was talking about sending my husband home with 2 stomas. . . Remicade was such a scary medication to be faced with, especially when his aunt had died of MS . . . my life went from perfect to complete misery in no time at all, and I couldn't deal with it.

My mom had to come all the way from India to help me face each day as it comes. That's the trick I was missing - I didn't know how to take it a day at a time, and sometimes I still don't. I wanted quick answers, miraculous recovery, and my old life back. And I convinced myself I couldn't be happy without that perfect life back. Well now, I sing a different tune. I work very hard to take it a day at a time, and even if my husband's health isn't perfect, we can still have a perfect day doing the things that his health will permit. Everytime worry for the future threatens my happiness today, I willfully try to set aside that worry. Meditation and making conscious choices about the things I expend my mental energy towards has helped make my todays happy.

My husband normally takes care of me - he does the laundry, the dishes, wakes me up in the morning with just enough time to get ready, makes coffee for me in the mornings even though he never drinks any . . . and when he is sick, he can't do any of it. He's so weak, and so in pain, and so it is a hard adjustment for me. I not only end up worrying about him, and this anxiety and depression makes it even harder for me to do the chores around the house and take care of him. But now I have a better handle on things. I don't feel bad if something doesn't get done, I just do it later. And I smile at my husband, and do my best for him, and try to gauge when to take him to the hospital, and wait of course impatiently for him to get better.

It's been a hard road, but one I am finally coming to some peace with. I am ok with the limitations this illness has placed on my life, and I am dealing with the uncertainties of the future. I think perhaps your spouses need to accept this illness - not try to wish it away. It will not go away, it must be dealt with, it must be accepted, and you both must come to find happiness together despite the illness. Also, dealing with this illness has shown me that I am capable of a great deal of compassion, empathy and strength when it comes to my husband. I hope your spouses find that well of strength and compassion inside as well. My husband and I are closer today than ever before, because we understand that our time together is so very precious.

I hope things get better for both of you. I know that there isn't much in the way of ideas to make things better in here, but maybe my experience will help you and your spouse work through some issues. Perhaps reading this gives you greater insight into your relationship. Here's another thing - I considered that perhaps I wasn't cut out to be strong and stay in the marriage with my husband. But then my mom asked me, what would you do if you ran away? Will you respect yourself? Will you love him any less if you ran away? Will you be able to build any kind of life for yourself carrying that much guilt around? And she was totally right - I would have had a very crapty life if I walked away from my husband, because I really do love him, and running away didn't actually help either of us.

Sorry I have no great words of wisdom. But I do know it's hard. I hope you both find love, and answers soon. I wonder how much of your husbands "we don't click" is because he is scared, and how much of it is real. He should face the fear, and maybe then, your relationship will have a chance.

Hugs. Hang in there!

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Stomach Flu Feb 2010
Canasa (1gm), Lialda (4.8 gms), Remicade (6 weeks), Pred (5mg every other day)
Hoping to stop pred, and move remi back to every 8 weeks soon
Currently In Remission


Ashworthml
Regular Member


Date Joined Jan 2010
Total Posts : 222
   Posted 2/15/2010 12:57 AM (GMT -7)   
I understand how you feel as well Jess, my ex partner was the same, he didnt understand when I had bad days , and was constantly moaning at me for something. All he could say to me was 'you not sick again!' and small remarks relating to anything he could think of. It was like verbal abuse to me, and mentally as well. He never could understand the concept of me having a long term disease and he would never help me, emotionally,mentally or physically. I sometimes think that me having Crohns did put alot of pressure on our relationship, as well as other factors, and I now know I am much better without him.
We have been seperated for over 2 years now, and my life has been much better and certainly I have been a lot happier. I have found a tremendous partner, that supports me, in everything, whether I am sick or not, and he does take a lot of burdens off me. He is always the one that when we go out to some where new, he looks for the nearest toilet signs, so he can direct me in the right way if I have an urgency to go, He always tells me off for not letting him help more, but I suppose because with my ex, I was always the one that did everything in the house and with the kids, whether I was sick or not, got used to being miss independent!
I think in the long run, it is hard for anybody to live with someone that has a chronic illness, and it does put a lot of pressure on a relationship, but I think both sides have to think positive and talk to one another a lot about how they are feeling, so you can understand each other, so the 'well' person knows when you are having a good day or a bad day. I know my partner knows when I'm having a bad day with out even telling him, he says he can see it in my face or my movements (although sometimes I try and hide it so as not to worry him!)
I hope you can sort things out though, good luck to you and hope it does come right for you in one way or another!
Michelle 40 years old
Diagnosed with CD 2004 (undiagnosed correctly +- 3 years, wrongly diagnosed with IBS)
Bowel resection 2005
medication: pentasa 500mg , Co-codomol 500mg/32mg codeine
loperamide 2mg (prn - take as many as 10-20 a day)
calcium tablets, multivitamin tablets, Omega 3
Ferrous sulphate(anaemia)
levothyroxine (thyroid)
questran light (3 sachets/day), 3 monthly B12 Injections


jessaccount22
Regular Member


Date Joined Feb 2010
Total Posts : 21
   Posted 2/15/2010 6:27 AM (GMT -7)   
I am very independent when it comes to my illness. I've had to take myself to the hospital drive myself back home and on the same day make errands to cvs to fill my prescription. Then come home to cook myself something healthy while he sits back on the couch watching t.v. I don't ask him for anything for fear that he may yell at me. As for Pv thanks for letting me know that there will be people that will stick by my side through sickness and through health.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 2/15/2010 8:40 AM (GMT -7)   
Hi Jessaccount22 and welcome to Healingwell. Sorry for the reason you have to be here though. My first husband couldn't handle my illness. Whats sad in my case is I had my 2nd flare since diagnosis while with him and was in the hospital for a month. He was really frightened that I was going to die and he would be left to care for the girls. We made it thru that flare, after he finally confessed his fears. I went into remission after that flare and things seemed to quiet down. But the whole time I was in remission I still had those bad times when I had joint pain or those bad days when you have eaten something you shouldn't have. But at the time I wasn't really well educated about Crohns so didn't put the two together. The joint pain was always there in my nearly 20 remission. But even though I wasn't having Crohns problems I was having alot of issues with herniated discs in my neck. So every few months my neck and back would go out and knock me down for a few days. He just couldn't handle a sick wife, so we ended up divorcing.

I am now married to the most amazing guy who has actually seen me during my worst years with Crohns. My husband cooks for me, massages some part of my body every single day, makes me soup when I can't get anything else down. He worries about me but not to the point that is out of control. His worry is more out of love. But when he is ill, I do my best to make him comfortable too. I hope and pray that if things don't work out with your hubby, you can find someone who loves you like you deserve. Love in my opinion, should always be unconditional. Good luck to you sweetie!

Hugs
Gail*Nanners*


Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
*~* http://www.healingwell.com/donate *~*

Post Edited (Nanners) : 2/15/2010 8:43:31 AM (GMT-7)

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