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View Full Version : Lupus and Guilt



Patricia914
09-08-2009, 12:13 PM
I know it's not my fault that I have Lupus, but I often find myself feeling guilty, especially in situations where I feel I am letting somebody down. Luckily, most of my friends have been understanding and accomodating to my illness, but when I am too tired to go and hang out or spend time with them I feel guilty. Also, there have been times when I have gone out and I feel as though I have put a damper on the whole atmosphere- if I can't eat what everybody else is having or I need to get food so I can take my meds, etc.
Sometimes I feel like I can't properly enjoy my youth- and when I do ignore what I need to do to control my Lupus, I feel guilty AND sick!

On top of that, I find myself at times getting angry with my immediate family. They have been extremely supportive, but in the past months I think they have forgotten that I have this condition, in a sense. Before they were very concious about the things they bought from the supermarket, but as time goes on more and more foods that I am supposed to steer clear from have been reintroduced into the house. It feels like a kind of betrayal, especially when they eat it in front of me. I know it is my burden to bear and I shouldn't have others carry my cross, but sometimes it really hurts when you and you alone can't enjoy what everybody else can due to a stupid condition.

:hissyfit:
Sometimes it just drives me crazy!
I'm actually lucky compared to most, I have managed to get most of my symptoms under control for now, but I just miss not having to think about things so much- and I hate feeling guilty all the time!

scarby
09-08-2009, 05:09 PM
Hi Patricia, I too find myself struggling with guilt when I don't spend much time with my friends because of my physical limitations. My friends and family are supportive but they still sometimes forget what I can and can't do and it can be frustrating. However, I just keep reminding myself that my friends mean well (sometimes to cheer me up) but being a teen, I find young people don't really understand the concept of being chronically ill. To them, being sick is like catching a cold or flu where you eventually recover after a while.

Maybe a gentle reminder to your friends and family. Sometimes that's all it takes. I find that is something I have to do with my friends every now and again (esp. when they go shopping...lol (I don't last very long standing)

Pugzi
09-13-2009, 05:16 PM
I understand exactly what you're feeling. My friends seem to forget that I have lupus and get mad at me when I have to miss school to rest. I agree that you should give a gentle reminder, and even though it's bothersome just try to ignore when they make you mad and try to understand their point of view too. I know it's not "right", but it's better than being guilty all the time.
I hope you feel better. Dealing with things like this can be worse than the symptoms themselves sometimes.

SuperGiv
02-08-2010, 04:40 AM
Hey I know exactly how you feel. I'm at University and although I find making friends very easy, keeping them is difficult when you have to drop out on them. I find the best option is simply explaining your illness, perhaps linking them to wikipedia just so they can understand it better. I also get very angry, i get so infuriated when I can't do my work cause of brain fog, or can't go into uni or on nights out cause my legs hurt, but I'm lucky that y boyfriend (who i live with) and my close friends understand, and usually just bluntly tell me to calm down, because that works.
It is hard to not feel guilty, but its important to realise that if you had upset people or let them down they'd tell you. 99% of people that know about your illness will be perfectly understanding and the 1% that arent, arent worth it :)

Amymarie
08-03-2010, 05:27 AM
Although its not so nice its nice to know that other people are going through the same thing and understand this is what im finding so hard as of late! not only do I feel bad for letting people down Im also some what jealous of all the things my friends can do with out a worry drink eat whatever stay out all night feel fine... play sports the list goes on. Stay strong you are not alone x

rob
08-03-2010, 01:15 PM
I say screw guilt, I've had enough of it. Take me as I am or go the frak away, is pretty much my attitude anymore. I'm lucky in that I have weeded out all the intolerant types in my life, and am surrounded by supportive family and friends who are very understanding. We didn't ask for these crappy diseases, and we have nothing to be guilty about. In fact, I think people who live with pain and chronic illness are incredibly understanding of others, accept others as they are, and have an empathy that makes them really a joy to be around. I see it everyday here. And all that, despite the fact that we feel like hell more often than not.

Just yell "Screw Guilt" a few times, you'll feel better for it. OK, I'll get off my soapbox now.

Rob

BTW-Welcome to WHL Amymarie!

SandyR
08-11-2010, 08:04 AM
Patricia,

Your feelings are normal and are very reasonable reactions to losing a part of yourself to this disease. You are not at all alone, here or in your life, so don't forget it.
Are you familiar with the Kubler-Ross model (also called the 5 Stages of Grief)? This explains it very well. http://en.wikipedia.org/wiki/K%C3%BCbler-Ross_model You will probably find that this article describes your feelings in at least one or more of these stages and you will see that you are just going through an emotional adjustment right now. Different people handle it different ways. Perhaps you already have an outlet to handle your emotions but if not maybe you could try journaling or drawing or even, as Rob said, yelling.

Islablue
09-11-2010, 02:16 PM
I say screw guilt, I've had enough of it. Take me as I am or go the frak away, is pretty much my attitude anymore. I'm lucky in that I have weeded out all the intolerant types in my life, and am surrounded by supportive family and friends who are very understanding. We didn't ask for these crappy diseases, and we have nothing to be guilty about. In fact, I think people who live with pain and chronic illness are incredibly understanding of others, accept others as they are, and have an empathy that makes them really a joy to be around. I see it everyday here. And all that, despite the fact that we feel like hell more often than not.

Just yell "Screw Guilt" a few times, you'll feel better for it. OK, I'll get off my soapbox now.

Rob

BTW-Welcome to WHL Amymarie!

You are my hero! I'm the guilt queen. I feel guilty constantly whether it be friends, family, or my husband because they have to either wait for me, do something without me, or wait ON me hand and foot when I'm sick. I feel so guilty all the time like I have control over this. I know I don't but certain people in my life that claim to be my best friends are intolerant. I am going to have to start saying SCREW GUILT to myself. Nice reply thanks for this whole thread!

rob
09-11-2010, 04:06 PM
You are my hero! I'm the guilt queen. I feel guilty constantly whether it be friends, family, or my husband because they have to either wait for me, do something without me, or wait ON me hand and foot when I'm sick. I feel so guilty all the time like I have control over this. I know I don't but certain people in my life that claim to be my best friends are intolerant. I am going to have to start saying SCREW GUILT to myself. Nice reply thanks for this whole thread!

Wow, thank you. I'm glad my words help. One thing though, when I say screw guilt, I actually use a different word than screw! Since I'm a moderator here, if I said it, I'd have to give myself an infraction for foul language, and that would be, well, just weird!

debbie-b
09-11-2010, 08:45 PM
Wow, thank you. I'm glad my words help. One thing though, when I say screw guilt, I actually use a different word than screw! Since I'm a moderator here, if I said it, I'd have to give myself an infraction for foul language, and that would be, well, just weird!

Oh Rob,
You are just a lovely young man and funny as heck.
I bet you are fun to be around.

Debbie

magistramarla
09-11-2010, 09:00 PM
I'm not as young as most of you on this thread, but I sometimes feel the guilt, too. My husband is very athletic for his age (54) - he bikes to his classes, six miles each way, and usually runs or walks at a fast pace anywhere he goes. I feel guilty for slowing him down so much when I try to go anywhere with him, even though he doesn't complain.
I now have a wheelchair for outings, and it helps so much! We can wander around at his pace, with him pushing me. We can also wander around longer, since I don't get tired out.
Jeff also claims that pushing the wheelchair is good exercise for him, so he's happy.
I also hang out with a lot of young and healthy ladies in The Officers Students Spouses Club. I sometimes feel guilty for not being able to keep up with them. However, they are all quite understanding and don't seem to mind "the old lady with the cane" at all.
I've learned to make a lot of compromises because of my AI diseases.
Hugs,
Marla

Shani
09-13-2010, 10:04 AM
Hi Marla,

I admire your positive thinking, I sometimes feel 'guilty' too.
Because my people of my age can do things that I can't do, as it requires a lot of energy out of me to do simple things.
But need to stay strong and make the best of every single day.
Hugs!