Disappointment to loved ones?

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Regular Member

Date Joined Jun 2006
Total Posts : 267
   Posted 10/10/2007 10:40 AM (GMT -6)   
Does anyone else live with a lot of guilt because they don't feel like they can give their best selves to their friends and family? I always feel like I'm disappointing someone because I feel unwell a lot. I don't have the energy I did before and I hate that I can't (or don't) participate in a lot of things because of the CD. Sometimes I feel like such a burden. Anyway, just venting...blessings to all!
Marci C.
38 years old, dx with Crohn's disease March 2007, currently on Humira, Entocort and hydrocodone (for pain), and Effexor

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 10/10/2007 11:00 AM (GMT -6)   
you are definately not alone in that feeling
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I will find a way, or make one.-Philip Sidney
Make sure your suffering has meaning...

New Member

Date Joined Oct 2007
Total Posts : 5
   Posted 10/10/2007 11:08 AM (GMT -6)   
I used to feel guilty, but there is no reason to if you do the best you can. Sometimes you may not feel up to something, it doesn't mean you are a bad person or you are letting anyone down. You living with a chronic illness and doing the best you can, if others feel like you are letting them down pray they don't have to walk a mile in your shoes.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 10/10/2007 11:08 AM (GMT -6)   
I have felt like that definetly. My husband is awesome, but sometimes I don't like saying anything to anybody else, because all I ever hear is "your always sick". But recently we had the "spoon theory" posted, that might be a good thing to share with your love ones, maybe it will help them understand what you are living with. Unless they live with what we do, they really aren't going to truly understand. When people look at us they always think "you don't look sick", but its because our disease is in the inside where it can't be seen. Hope I helped a little. God Bless!
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

Veteran Member

Date Joined Apr 2006
Total Posts : 1665
   Posted 10/10/2007 11:49 AM (GMT -6)   
I am finding myself getting worse after a few months of being not too bad, and I have thought about what I did wrong when I was really ill last year and i decided that feeling guilty and embarrassed were the thing I have to do differently this time. I don't need to convince others how I am and I don't have to feel guilty about it. since I still don't even know for sure what is wrong, it causes lots of people to ask lots and give too much advice. I am just not going there this time. I push myself to be a great friend, wife, and mom, and if that isn't enough I just refuse to feel bad about it....THAT is my goal! yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. In December had adhesions cut through a laparoscopy. Now just taking Glycolax, metamucil, and began Humira 9/07.

Veteran Member

Date Joined Dec 2006
Total Posts : 559
   Posted 10/10/2007 11:55 AM (GMT -6)   
Tell me about it. I've sat with a loaded gun in my hand, very seriously thinking about shooting myself so that I wouldn't be a burden on my family. Obviously, I didn't do it. Sometimes it's hard to know which is worse, the physical pain of the disease, or the strain it puts on the rest of the family who helplessly watch their loved one suffer. I have no answer to that question. All I can do at this point is try to get well.
Crohn's since 1988
3 resections

New Member

Date Joined Sep 2007
Total Posts : 18
   Posted 10/10/2007 11:55 AM (GMT -6)   
Everyone is really supportive of me, but I always feel guilty that I can't take that job, or work more or do something to make my family and I more comfortable. It is a struggle and there seems to be little I can do about it. My current job, while terrific, pays low but has very flexible hours and I have loads of sick and vacation time. Just what someone like me needs. But like I said, the pay is low.

Veteran Member

Date Joined Jan 2007
Total Posts : 3200
   Posted 10/10/2007 11:58 AM (GMT -6)   
I even get on my own last nerve!!

Too many years with CD
Two bowel resections, several obstructions.

Laughter is the brush that sweeps the cobwebs from our hearts

Veteran Member

Date Joined Feb 2007
Total Posts : 1010
   Posted 10/10/2007 12:51 PM (GMT -6)   
Marci give yourself some time. You have only recently been diagnosed and it is going to take time for you to grieve your old life and figure out what this new reality is going to mean. Yes there will be times when you are not going to feel 100 per cent, but if you've ever heard of the term, "each as they are able" it gives you a sense of where I'm coming from. Instead of looking at all you can't do or can't do at the same level you have always taken for granted, perhaps you can work on internalizing the measure of how you are contributing. Factor first all the energy just being sick consumes and then re-evaluate how much you still do. It is a miracle that many of us can get up and leave the house, given how miserable we feel. We perform despite dealing with symptoms that would have our healthy contemporaries moaning in bed, calling in sick and generally expecting the world to stop until they felt better. The only difference is that for many of us there is no feeling better so we adjust to our new realities.

Statistically, we crohnnies take less unjustified sick time than our healthy cohorts, we continue to contribute in many ways, despite our challenges. I think of my former workplace environment, where staff could take up to 18 days a year in sick time. My healthy co-workers considered that their right. It never ceased to amaze me when one or another called in sick for "a personal" day. In the 25 years I worked, I never took a sick day unless I couldn't physically get up, yet i often felt like you -- worried that i wasn't pulling my fair share or that I was one flare away from not being able to meet my obligations. In my last position we could roll over a certain number of our unused sick days each year. I was there for three years and when I had to go on disability while awaiting surgery -- I had enough sick days that I continued to be fully paid all the way through the six week waiting period for benefits to kick in. I wonder if I had used some of those sick days instead of hoarding them if I might not have had such a hard time when I did finally have to give in.

I'm looking at all this from a very different perspective now and I realize that "less than perfect" is still "good enough". It's the first time in 30 years that I'm actually accepting help from my husband and family. I'm finally let them in on my realities rather than trying to hide my symptoms. They are relieved and I've had to realize that I didn't do them any favours all those years I tried to be strong and hold it together myself. I was doing them a disservice along with myself.

So go slow and give yourself a break.

30+ years living with Crohn's.

Mormor Vicky
Veteran Member

Date Joined Mar 2007
Total Posts : 684
   Posted 10/10/2007 1:08 PM (GMT -6)   
I find that I have a similar problem. For years I lived with this disease in hiding. I still worked a full time job but as the years progressed I got slower and slower. At least my children were almost grown. Then, bam, emergency resection. Crohn's detected, meds administered. I felt better then I had in years. Started taking better care of my family, cooking, cleaning and being Mom and Wife again. Now I've noticed in the last month or so that I'm getting sick again. I don't think my husband believes me and thinks it's because I talk to you all everyday. I think he thinks I'm just looking for trouble. He doesn't understand, and I get tired of trying to make him understand.
Vicky / 47 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
Daughter (26) also has Crohn's since she was 12.
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor

Veteran Member

Date Joined Oct 2004
Total Posts : 504
   Posted 10/10/2007 1:50 PM (GMT -6)   

I feel guilty because I don't usually go to gatherings, especially after work.  Getting through the day is just all I can do, in addition to squeezing in shopping errands.

Then, I always have monday off and I have spent most of them lately in the doctor's office.  So, if I have free time, I want to be free and at home where there is no worry about a bathroom.

But, I know they think I blow everything off, but for them it's a couple hours out.  For me, its a morning in the bathroom just to attend this "small event".

I can usually get to work okay, but a trip, an event, an appointment, here comes the trots and it's all I can do to get out the door in time, then suffer with "urge" while I'm out.

Diagnosed with Crohn's August 2006
Age 30
Asthma, Rosacea, Venous Insufficiency, Malabsorption and Excessive Bile production
Questran 1 package per day
Colocort Enema 2 per day
Advair 100, 2 per day

Regular Member

Date Joined Oct 2007
Total Posts : 67
   Posted 10/10/2007 1:53 PM (GMT -6)   
I know how you feel. I feel like i'm disappointing my husband and since our sex life isn't going too well right now due to a fistula and fatigue, i'm afraid of losing him. I'm also not the mother i would like to be to my 3 kids. I'm not able to jump on the trampoline, run, or play soccer with my son, but i'm taking it day by day and i find that getting on here and seeing that i'm not alone helps me feel better. I am also in the process of starting a support group at my church. Just know that there are others going through the same, and i'm sure that it is hard for your family and friends to see that you aren't feeling well. Just do the best you can...i'm sure everyone will understand.

God Bless,

27 yr old female, diagnosed with crohn's colitis with stricture of the colon april 2007, first fistula- this month :(  
joint pain and swelling
current medications:  Imuran 50 MG, Lialda 1.2g, tramadol 50mg, flagyl, will be starting remicade soon

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 10/10/2007 3:30 PM (GMT -6)   
Hi Marci I think it is a part of having IBD that there are times when we get run down or have pain and no matter what kind of sickness a person has there are going to be feelings with it. The most important thing is you have a place in life and there are days when things do go good for us. We all have our lows in life and thank goodness we have each other here to help us threw every day of our lives good or bad. One thing about Hw is that a person doesn't have to worry about pushing ourseves. Don't let what you think you should do get you down. You know what you can and cain't do. Don't punish yourself emotionally. lol gail

Regular Member

Date Joined Sep 2007
Total Posts : 29
   Posted 10/10/2007 11:15 PM (GMT -6)   

i can relate everybody is always doing for me and i want to do for others but i cant cause im always sick if it isnt one thing  its another and i hear the same remark also "your always sick" its irritating but im getting better at looking past it they love me and dont want to  see me like this and it comes out as nasty comments somestimes.



Veteran Member

Date Joined Mar 2007
Total Posts : 900
   Posted 10/11/2007 2:21 AM (GMT -6)   
Dear Marci,
You are not alone in feeling the way you do. I've just turned 50 and have had CD for 30 years and some. I am just now beginning to accept my limitiations ( I also have been struggling with MS for the past 4 years). My "function" in society would be minimal by what contributing to a community standard might be. .....but I've come to realize that my "contribution" to people is at a much more personal and individual level.
I have had friends whom I've been fortunate to know for years. One such friend told me not too long ago, when I was going thru a particularly difficut stretch....but still managed to get out on my scooter, smile and genuinely be happy to see people....ask how neighbors are doing etc....not much by my standard but according to her, it was a lesson for her everytime she saw me.....on how to appreciate life, how to persevere, how to be happy "in spite" of circumstances." She thanked me for everything I had taught her over the years....it blew me away,
because I'd always felt like such a failure to my community and family. I've overheard my daughters speaking to their friends about me also. I guess plugging along, and trying to make the best of things, finding the good in an otherwise rotten day , has impressed them as well. I take great pride in the fact that my tired old smile has made someone else's day better.....and that my stubborn approach to living has taught my neighbors, friends and family how to be grateful and that gratefullness multiplies all the good in your life.ten fold.
I sound like an old preacher. looking back at my own life and the people that have influenced or impressed me the most....I realize weren't the high powered high-achievers but simple people with various difficuties in their lives that demonstrated a quiet strength, faith and "joie de vivre".
So now I try not to waste unnecessary energy on feeling bad....although that is a decision I consciously have to make everyday. ....I think you are having more of a positive impact on your family WITH this disease than perhaps without it.
50 yr.old retired RN,Crohn's D for last35 yrs..severe esophagitis, migraines,strictures,urethral stricture,depression,probable MS.

Regular Member

Date Joined Jun 2006
Total Posts : 267
   Posted 10/12/2007 7:27 PM (GMT -6)   
Thank you all so much for sharing your struggles with me and for the words of encouragement, it means more than you will ever know. It helps so much to know there are people who really understand what it's like to live with this disease. Luv to you all!!
Marci C.
38 years old, dx with Crohn's disease March 2007, currently on Humira, Entocort and hydrocodone (for pain), and Effexor

Regular Member

Date Joined Oct 2006
Total Posts : 148
   Posted 10/12/2007 8:48 PM (GMT -6)   
To be honest and this is terrible, I use my it as an excuse to avoid people that I rather just not be around. Ha.. so there's an upside.
25 years old
Diagnosed 9/06 with Pancolitis. The diagnosis was changed 9/20/07 to Crohn's disease.
Located in my large intestines, stomach, and mouth.
Asacol 3 3x's a day reinstated 9/20/07
Methylpred 40 mg a day.


Veteran Member

Date Joined May 2003
Total Posts : 1671
   Posted 10/12/2007 10:38 PM (GMT -6)   
None of us asked for this. No one in this world is guaranteed to have a perfect, healthy family. Sure it may be hard on our family members, but the truth is, it could have been any one of them. Or maybe it will be something else for them someday. No one knows what the future holds. And you will be there for them and wouldn't want them feeling guilty. I bet if you look around, you will see other families that have health challenges to deal with. The thing that helps me is realizing it could be worse, and looking for the things I can be thankful for, and the things I can still do.
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