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Do you sometimes have a feeling of guilt having your illness?

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Crohn's Disease
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Posted 2/8/2011 5:58 PM (GMT 0)
I was diagnosed in '98 with CD.  I've been doing well, take my Pentasa and am careful to eat nothing that will upset me.  Even after having this for all these years I most always feel guilty when I do feel badly, ruining plans or not feeling up to keeping up with my daily routine, but I know this illness is not my fault.

I just wanted to ask...what do you say when someone asks ''Why do you think you're not feeling good today?''...as if I have control over this, which I don't.  Then I find myself thinking back, ''did I eat something I shouldn't have?''...''have I been overdoing it or maybe have been stressed and have not been getting enough rest?''...the other day I was asked that and just said ''How do I know...I have Crohn's Disease...sometimes it just happens''.  I have such sympathy for everyone with this literally crappy disease and all of their suffering.  I've been hospitalized twice with flares, but luckily have had no surgeries.  I recently saw an acquaintance I had not seen for several years, but she knows of my illness.  When she saw me she said ''You don't even look like you're sick''.  What do you say when someone asks ''What do you think you did that you're not feeling good today?''  Maybe I'm not explaining this very well, but I always feel as though I have to work through my fatigue or pain when all I want to do is relax about it, and sleep the day away with my heating pad, not drawing attention to myself and not blaming myself.

Post Edited (ragbag) : 2/8/2011 11:05:45 AM (GMT-7)

Posted 2/8/2011 6:05 PM (GMT 0)
When my mom gets stressed out and such over my disease she always says "Well at least you don't have cancer, you're not fighting for your life"
It makes me feel guilty when I'm feeling sick. I've had a really rough time this year, be in the hospital four times, and three surgeries on an abscess.

It's just hard to have a disease where people can't understand what you are going through, even someone with the same disease may not understand. MY brother and I both have disease but he doesn't have it nearly as severe so it's hard for him to understand some of the things I've gone through. So I feel guilty asking for help because sometimes it may not seem like I need it even though I do.
Posted 2/8/2011 6:07 PM (GMT 0)
I know just what you mean.  You don't always look sick and it can be literally minutes between feeling fine and feeling crappy.  I do get the guilt especially with my daughter.  "Sorry, mommy can't help...mommy doesn't feel good...go ask daddy...etc"  Then my husband has cycles of understanding and not understanding.  Most of the time is very caring and considerate of my needs.  One day we were rearranging the living room and I was trying to hook up a cable, simple.  He makes me move over to do it because he "didn't want to hear me complain later that I did too much and was hurting".  I let him have it on that one.  People just don't understand how unpredictable this disease is and the majority of it is internal so not always visible!  Thats what I struggle with-do they believe I'm sick or just saying I'm sick.
Posted 2/9/2011 7:41 PM (GMT 0)
and I really hate the "How are you feeling" question/greeting...and the "but you don't look sick" (there's a whole website about that)
www.butyoudontlooksick.com/articles/personal-essays/never-ask-how-are-you-feeling-today/

www.butyoudontlooksick.com/articles/sick-humor/sick-humor-it%E2%80%99s-always-darkest-before-the-dawn%E2%80%A6-and-other-useless-crap/

I have had to cancel so many things with friends and family...I can't plan on ANYTHING (it's easier if it's at home as I can retreat to my bedroom/bathroom if I'm feeling horrid)...I've had to cancel plans so many times. And I'm not the wife I should/could be...the feelings of guilt never end...
Yeah, I have come to accept, to deal, but it's not always easy, and harder to deal when you're not feeling so good either...
Posted 2/9/2011 7:58 PM (GMT 0)
Yep. Guilt ALL THE TIME. I have a four year old daughter who, sadly, understands when I am not feeling well to not bother me. My husband gets frustrated with me a lot. Sometimes, I will let him have it when he rolls his eyes or sighs loudly when I ask him to do something or tell him I CAN'T do something because I am not feeling well. The worst is when people say "you look great!" just because you've lost weight from being sick. THIN does NOT EQUAL HEALTHY!!!!!

I also have a lot of guilt for the predicament that I have put my family in financially due to all of this. I am going to have to file bankruptcy because I owe the hospital 40K and I have thousands of dollars due to different providers. (Not to mention car payment, student loans, etc.)

I try not to let it get to me, because feeling bad for myself and getting down only makes my symptoms worse. I try to tell myself that those who really matter truly understand.
Posted 2/9/2011 8:52 PM (GMT 0)
Ahhh.. this is the story of my life!

I can't count how many times I've had to cancel plans, or call into work. And I feel awful for doing it.
It seems the only person who understand is my grandmother, who's recently been diagnosed with Breast cancer. :\

I am sooo careful with what I eat, but sometimes I just don't feel well and there's nothing I can do about it. It's not like I choose to feel crappy! I just realllly wish people could be more understanding!
Posted 2/9/2011 10:12 PM (GMT 0)
Thank you so much for your replies.  You all ''get it'', and I appreciate your understanding and taking the time to write your stories.  Take care.
Posted 2/10/2011 9:35 AM (GMT 0)
Interesting how reading these posts forces me to think about things I've tried not to.

I feel the guilt when I can't do things with my son, or can't help my wife. Most people that know me don't give me the "you don't look sick" thing, and I'm thankful. The biggest guilt I get is when my mom over reacts to how I'm feeling. Actually, it doesn't matter how I'm feeling, as she always assumes I'm hiding the pain and not telling her. It's bloody awful annoying, but I know she cares. I wish she'd stop though. She starts getting upset and worrying, and that does neither of us good. It just makes me feel like crap.

Biggest issues I've had with the guilt thing were in hospitals, and usually from nurses who seemed to think it was their job to pass judgment on the patients. There was one that really ticked me off once. She blamed me for "drinking too much coffee" and not being able to sleep. It never occurred to that witch that they'd just put me on a huge IV dose of prednisone. I'd never been on prednisone, so I had no idea it was one of the side affects. Instead she was over by the next bed making a big deal about the "hero" (her term) high school football player that broke his leg. (sorry about the rant....)

Anyway, guilt is a big part of dealing with chronic illnesses, although it shouldn't be. I've been seeing a therapist off an on for many years to help deal with the issues of dealing with chronic diseases. She has been a big help, and I'd recommend it to anyone.
Posted 2/10/2011 1:15 PM (GMT 0)
I am like that for sure. I for sure feel guilty. One of the ways I fight that is to be 100% compliant on the strictest diet out there. As well as SCD I am doing other diet stuff that is hard. I think doing all this SCD and other stuff reduces the guilt for me as I try ot tell myself, I have done everything I can. I know for me, even if they came out with a study that said only 1% benifit I would still SCD as it helps with the guilt of not doing all I want to as a husband and father.
David
Posted 2/11/2011 6:45 AM (GMT 0)
I am in constant guilt. I even start igoring my phone because I'm tired of apologizing for being sick. I've had to back out of 2 shows and one I was supposed to be doing the choreography for... I let an entire team down:(. For weeks I was saying I'm sorry I can't leave the house (ahem bathroom) I'm sorry I fell asleep (ahem for 16 hrs) I'm sorry I have a fever...yes again...yes I had a fever last week too. Ugh, finally I sent a mass txt out saying "I am not apologizing. I am sick. I will not be there." It felt amazingly good to say that... ;)

I edited this post just because I forgot to say thank you for this thread. It was really helpful to see how everyone here is dealing with this and I'm not alone. blush

Posted 2/11/2011 9:06 AM (GMT 0)
Yes yes, I feel guilty
and I love sharing here on this forum because I can see how pointless the guilt is
I feel, now, WE ARE JUST SO FRAGILE THINGS

These days I just feel depressed, not only sick but everything is getting wrong, my work, and things like that. But having a walk in the streets seeing how miserable people can be, and that still I can walk, talk, think, and sometimes even eat, well I should not worry.
A friend arrived from Greece, now having dhiarrhea and nausea, (nothing chronic, just a welcome from India) and he cannot eat anything> I feel even though my condition is chronic, still i could eat a bit today.
And it is nice to have a friend around
Let us try to appreciate whatever goodness is left in our lives :) ;) :)
The sky
The earth
and life still
for the time being!
Posted 2/11/2011 9:53 PM (GMT 0)
my sense of guilt is reduced to the idea that I could have been a different person, with a different job, a different life and different people to know and to stay with, if I hadn't crohn's and the feeling I induced myself getting it cause I followed bad rules in the months before I had it. this almost made me crazy (or maybe without "almost"). but sometimes I manage to accept this was just a relation, not the cause.
Posted 2/11/2011 11:10 PM (GMT 0)
I do feel some small guilt when I am asked similar questions, because I think maybe if I hadn't eaten X I would feel better. I feel far more guilt for insulting one of my high school classmates undeservedly. Even that I push from mind fairly quickly. I deal with enough pain as it is, I don't need any more.
Posted 2/11/2011 11:21 PM (GMT 0)
Yep, definately have to agree with everyone for feeling guilty. I know it's not my fault. But I still feel like I let people down. Like having to take time off from work for doctor's visits or Remicade infusions. Or to call out sick and have an entire schedule of patients canceled. Some people plan their day around an appointment for me and I feel bad canceling at the last minute...

My husband has to do a lot of stuff around the house and sometimes pick something to eat out because I'm too tired to cook. For a while, I kept him up alll night because I was in so much pain...we're young and just got married. He doesn't get to live a normal life because I'm too sick to go out, I can't drink anymore, he loses time from work to take me to the doctors..

I rarely get to see my family because I'm so exhausted on the weekends from the week, that I can't make the drive out to see them...

I can't visit friends who live far away because I am using what's left of my vacation time for doctor's appointments and Remicade...

Yeah, there's a lot of guilt with this disease...which I think makes it worse.
Posted 2/12/2011 2:14 AM (GMT 0)
Tooth -

I can really relate. Although we just had our 30th anniversary, I was diagnosed at age 23 just 3 months after we got married. Back then there were lots of theories about stress and certain foods causing IBD. I have always felt guilty that my poor husband got blind-sided so badly. I was reeeaaalllly sick. In the ICU for 7 weeks, then a regular hospital bed for another 7 weeks. It ended up being 99 days in the hospital. Once thing I can tell you, if he sticks with you through all that, he definitely loves you.

But I still feel guilty for us not having a normal life, not to mention a paltry sex life. I can't drink (either cause pain, or, for the last 18 months because of being on Flagyl). The only good news is - I am his designated driver :) Which is good, cause he has a stressful job, and right now i can't work because of this stupid fistula.

We get by with holding hands, snuggling, and talking alot. And it took many years for me to find the right balance between telling him enough, or telling him too much (so that he is worried).

I console myself with knowing I have done the best I could. When I was in counseling, the psychologist told me I was a highly functional depressed sick person, and not many people could have coped as well given so many health issues.

So we do the best we can, and we communicate with our loved ones, and try to forgive each other our flaws..
Sudsmom
Posted 2/12/2011 5:29 PM (GMT 0)
I used to feel guilty, but now I don't.

When it comes to my kids & family, though, I don't feel guilty, but I do feel sad that I don't do everything I'd like with them.
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