Dealing with jerks who don't "get it"

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Cyborg Ninja
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Date Joined Jan 2006
Total Posts : 660
   Posted 4/16/2008 12:11 PM (GMT -7)   
How do you deal with people who don't understand what it's like to be chronically ill? And not only don't understand, but don't care to try to. I have to live with a few people who are about as knowledgeable on the subject as a newborn baby, and it really gets on my nerves to hear them griping about something that's not even their business in the first place. "I don't know how you live stuck in your room all day on such a gorgeous day!" And from my father's fiancee (my mom died a few years ago) of all the nerve. Um, I just had a ****ing seizure and a concussion a few days ago, excuse me for laying down? ***?
Current DX: Graves' disease, Crohn's disease, gallstones, scoliosis, syringomyelia
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lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 4/16/2008 12:15 PM (GMT -7)   
I'm sorry you have to go through that! It frustrates me to NO END that people have the NERVE to complain about "little" things that they bring on themselves. I think to myself, "Well excused me, you don't have cancer or a chronic disease so please shut your pie hole." But then I just remind myself that I am lucky to have a brain and am thankful for what I have and not only do these people not get it, but they never will. What we have gone through have made us stronger and if other peeps don't get it, it's their loss for being so da** shallow and ignorant. When I come across people like that I just shake my head and am glad I'm smarter/stronger/and have a better quality of life (beside poo problems) then they do. Keep your head up, it sucks coming from family, but sometimes it happens.
turboemma.blogspot.com/


MishBall2
Regular Member


Date Joined Apr 2007
Total Posts : 345
   Posted 4/16/2008 12:35 PM (GMT -7)   
it drives me nuts when my husband gets frustrated with me because i have no energy and dont feel like going out or going wherever to walk around and smile at people. grrrr. . . dont you think I'd RATHER go out than sit in feeling poopy (no pun intended - although it is fitting)!

Generally he is supportive, but he gets frustrated sometimes and doesnt know when to shut the heck up!
33 years old. Diagnosed in 2002ish. 
Taking Asacol, Lomotil TID, and on Remicade since 2004. 
Lower Bowel area only, except for the short stint (about 2 weeks) that I had mouth sores.  Also have external/anal fistula and anal/vaginal fistula. 
 


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 4/16/2008 12:39 PM (GMT -7)   

I have a friend that complains about being tired and sick a lot

i work, have kids and have CD and she knows I have bad days and will get mad when i don't feel like going out etc... I get so sick of her telling me how awful she feels when she knows darn well I have a disease and have shared with her how hard it is sometimes.

I am sure most of us can relate to how you feel... we understand!

Karen



 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 4/16/2008 12:52 PM (GMT -7)   
I wish I could give some pointers on how do deal with it but I just don't have any. Living with the ones who are our biggest "critics" is so hard and truly (IMHO) detrimental to our health. Been there, done that. I'm so sorry you have to deal with this!

dustspeck
Veteran Member


Date Joined Sep 2007
Total Posts : 565
   Posted 4/16/2008 1:47 PM (GMT -7)   
i had to lay it down with my best friend the other day. i am returning to work tomorrow after 6 months off and i am quite concerned about the fatigue i have been experiencing. she says "oh you'll be fine, it's just cause you are home all day". uhmm, NO. and i said to her "look, i know how *I* feel and *I* have never felt this darn tired in my whole life!". while i was unemployed i did do some exercising and made sure i was out of the house practically every day. anyways, i have come to the conclusion <i>most</i> people won't ever understand us, no matter how hard we try to explain. i am not even going to get into it with her how one of the top things on my list of starting a new job is finding out how private the bathroom is!
.: stephanie :.
32 y/o female diagnosed 8/8/7 with crohn's of the terminal ileum w/ stricture/scarring
meddies: 6mp, percocet, trazodone, ativan, iron, calcium, folic acid & some other vits


gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4095
   Posted 4/16/2008 1:56 PM (GMT -7)   
Sometimes I don't even get it!!!!! I find myself often thinking thoughts like "why am I so tired," or can I just have one 24 hour period of time when I feel fine!!? I think some people are naturally more empathetic than others, but I remind myself that I probably don't completely understand what other people suffer through. I just try to be peaceful and as patient as I can with myself...some days it works better than others!
49 yr. old female, diagnosed with Crohn's in small intestine and terminal ileum Sept-Oct. 2007. Also have IBS, and had Salmonella Dec. '07
currently taking Pentasa- 8 250mg pills per day, Cipro 1 week/month, Metamucil, probiotics


Kal
Regular Member


Date Joined Jan 2008
Total Posts : 53
   Posted 4/16/2008 2:00 PM (GMT -7)   
I have a few friends who don't understand why i can't go out with them some days when i'm really not feeling well, and they'll say some stupid things like what's said above. Usually what will shut them up is a very detailed description of what my body's doing at the moment and why it is i certainly will not venture out of the house. Or if it's just one of those days were i have no energy for what seems no reason I'll just not answer the phone if they're calling.
Kal - 24yr female
Hiatal Hernia, Crohn's, Anxiety, Anemia,
Meds: 3mg Budesonide, 50mg Imuran, B12 Injection, Iron supplement, pantaloc (for hernia)


MishBall2
Regular Member


Date Joined Apr 2007
Total Posts : 345
   Posted 4/16/2008 2:10 PM (GMT -7)   
dustspeck said...
 she says "oh you'll be fine, it's just cause you are home all day".

I forgot about that one!   Hubby will say that too, you're just tired from lying around all day or from sleeping too much. mad
33 years old. Diagnosed in 2002ish. 
Taking Asacol, Lomotil TID, and on Remicade since 2004. 
Lower Bowel area only, except for the short stint (about 2 weeks) that I had mouth sores.  Also have external/anal fistula and anal/vaginal fistula. 
 


Melissa H
Regular Member


Date Joined Mar 2008
Total Posts : 85
   Posted 4/16/2008 2:27 PM (GMT -7)   
MishBall - I think that's the hardest part for me, that my hubby doesn't understand. Bosses, co-workers, friends, family - it's hard but I can deal with them. But it's the worst when you have a spouse that just doesn't get it. And I have no idea how to make him understand what I feel like ALL THE TIME!

My best friend, whom I love dearly, told me yesterday that "you're probably just really stressed out right now". This was after finding me in my office doubled over having strange chest pains (from the CD? I dunno). That answer kills me though! And then my dad once asked how I was doing and I said something along the lines of "oh, you know - my tummy's hurting and I can't get out of the bathroom."...haha...he says "ya, there's a weird bug going around". LOL! He knows I have Crohns! They only mean well though.

I sometimes wonder if that's the worst symptom of all, appearing to be "okay" from the outside but in turmoil on the inside.
30 year old wifey and mom to 3 little girls, 2 dogs, and 2 ratties and working full-time outside of the home...nap anyone?
Suffered with symptoms for 12 years, dx Crohn's-Colitis 11/2007.  Taking Asacol, Omeprazol, Rowasa, Bentyl. Flaring off and on and trying to avoid steriods.  Visited a naturopath, got a vitamin B injection and have started taking NF Formula's "RF Plus" with every meal.

hukleberrie
Regular Member


Date Joined Jan 2008
Total Posts : 491
   Posted 4/16/2008 2:47 PM (GMT -7)   
My problem, is I have decided not to say much about how I feel. So then I get my family & friends saying, "You must be feeling good." Just because I am out of bed or not whining. At this point, I HAVE to work 3 jobs & keep up the house & such. I let it go for a while thinking I was just sick for a couple weeks, but after months, I realized I just can't lay around, or NOTHING will get done. So now that I do things people think I am magically healed or something. If I gain 5 lbs, it's "Wow, you look good. Gained weight. Must be feeling pretty good, eh?" (Maybe it's just water weight from the prednisone!?!?)

No one has a clue as to how sick I feel.
Live for today, for tomorrow you might just get hit by a semi.


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 4/16/2008 3:09 PM (GMT -7)   
What I hate even worse then they don't have a clue how sick I am is when they do have a clue and want to tell me how to fix it or what they would do in my place. Some days I really do look sick and for some reason people think its okay to comment on it.
Sj

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 4/16/2008 4:46 PM (GMT -7)   
I think some of it stems from people not wanting to know or take any responsibility for how serious things are with us. If they can say it's in our heads, our fault, or a "bug", they are absolved of any responsibility to care or help.

I notice it too when I'm feeling sad, anxious or fed up with this illness. There are times when I'd love to talk to someone about how I'm feeling, but people put up an emotional wall - they don't want to hear or experience those emotions themselves.

We're not alone. The same thing happens with cancer patients and with the terminally ill. I think it's even harder for the terminally ill. Sometimes they want to talk about dying, but people put up walls and tell them that they're "going to be ok" and that they "shouldn't worry", and the dying person is left with nobody to talk to.

It's hard. Illness is isolating enough; people don't need to compound that isolation by their behaviour.

Ivy.
Co-Moderator Crohn's Forum.


Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 4/16/2008 5:49 PM (GMT -7)   
The oh-so-familiar struggle. I am seeking an answer to this question myself. Since my boss (who should care) is this way, I stopped saying anything about health-related issues altogether.

If someone/anyone has or comes up with a good resolution to this PLEASE shout it out!! I keep trying to resign myself to the fact that if they don't have chronic illness they will not understand; however, when the coin was flipped and I was in good health, I was always there for people I know living with chronic illnesses.

Hummm... what has happened to morality and kindness in this world. People seem more interested in Brittany Spears than the war in Iraq, and people want to complain about situations they have placed themselves in, but don't want to hear anything about life-changing illnesses that were not brought on by our own actions.


confused

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/16/2008 8:26 PM (GMT -7)   
Texan - you make me laugh w/ Spears v. Iraq. I had so much work tonight I could only give myself a half hour of TV. I watched the American Idol results show instead of the Hillary/Obama debate. But, my primary is over so my opinion doesn't matter anymore :)
26 Year old married female law student.  Diagnosed w/ CD 3 years ago, IBS for over 10 years before that, which was probably the CD.  I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid.  For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn.  I also have bad acid reflux and have been on PPI's since age 13.  I have been through prilosec, prevacid, and nexium.  Currently I am on Protonix in the morning and Zantac at night.  I alos take a birth control pill to allow some fun in my life.
 
 


Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 4/16/2008 8:42 PM (GMT -7)   
Hello, I think that's why we have each other.  This forum is so important because others who haven't gone through our struggles can't truly understand what we have been through.  I am lucky that my husband is my rock, he's clear to family members atowhat is going on and my situation.  But sometimes they still don't understand.  My friends are my few we truly care enough to listen and understand.  So don't feel alone, we are in this together!!!!!!!!!!!!!!!!!!!

justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 4/16/2008 9:41 PM (GMT -7)   
Next time one of these kinds of people get a nasty bout of stomach flu, while they're moaning and groaning, tell them that you feel like that EVERY DAY!!

broomhilda
Veteran Member


Date Joined May 2007
Total Posts : 1488
   Posted 4/16/2008 9:51 PM (GMT -7)   
I stop talking about my health issues too, except to my husband. Most of the time he realizes how I feel and will help out without being asked or just leave me alone to sleep. I don't like being a complainer and with this disease it's hard not to be. This is the only place I "whine" anymore. When asked at work, "How are you doing"? My reply is usually, "Still standing even to my amazement"! That pretty much cuts off the conversation because no one "really" cares about hearing "your" problems. My boss is pretty understanding most days, however, he's in his mid-seventies and had a major heart surgery 2 years ago and as an indirect result of this he now is in stage 3 kidney failure. He has not started dialysis yet but has determined if he is still walking around under "his' condition....why can't I. He has not verbally conveyed this but it's evident in his demeanor. What really gets my goat about this is I haven't had a real vacation in 13 years, I always have leave time left at the end of the year (mostly because I have no one to cover for me when I'm off) and I have only taken 3 hours off this year so far for a Dr.'s appt. This isn't some kind of competition!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.


Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 4/17/2008 3:57 AM (GMT -7)   
Tsit, you have a good point and I had not thought about that until now. ERs and doctors do have a level of skepticism towards CD. Without medical records and whippin' out a purse (now carry the large brief-size) full of bottles of meds for CD they (medical peeps) always seem to have a look of indifference. Never occurred to me that ANYONE would ever fake CD. ??? nono

I like the come back about "I am still standing even to my amazement" - L O L - It sure beats my canned responses "hanging in there" or on real bad days "I'm doing it." Think I may use that if my boss EVER asks me how I am doing... which I doubt he will. Hell, he doesn't even make eye contact now days because he knows how bad I am at this point. I am in the flare-up from hell... four weeks and counting. I am about to start packing my own TP with aloe vera in my big purse... thought! That would also be a good one to pull out at an ER!!! hehe (keepin' positive... keepin' positive)

Need to start a post on how many types of CD procedures there are after reading the one about the tube. (That one floored me)


You guys have a good day. I've got to get my game face on and get in to work (crining as I gimp on outta here).


-Leslie

pippy32
Regular Member


Date Joined Feb 2008
Total Posts : 88
   Posted 4/17/2008 5:15 AM (GMT -7)   
I work with a woman who constantly complains about being ill even though there is really not much wrong with her, This week she has 'fractured' her foot yet is walking round , bandaged up in 4 inch stilletos-she must have xray vision-amazing! Anyway, it used to really get to me but now i play my own little game which keeps me quite amuzed. I really egg her on 'oh my goodness, you've broken your foot, you must be in so much pain, you poor thing!!!' She loves the attention and i just find the whole situation amusing-god help her if she was ever really ill! What a joke she is!

Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 4/17/2008 6:33 AM (GMT -7)   
I really feel for you. I'm right there beside you. We don't look sick and if we don't think it ,it will go away. I have so many days I get so tired and mad at myself for the way I feel. Even my doctors ask me if I went back to work and how long I'm there. I tell them I can't work. My Dad tells everyone he knows I have everything under control now. He has no clue and he really don't want to either. I've found out most people don't care or understand what CD dose to you, as long as they don't get it. I had C-dif once though I had it again asked if I should come in was told no I could give it to some one. So I sent the sample in and sat at home alone cause no one here wanted it either......



Ne Ne

Texan with Crohn's
Regular Member


Date Joined Dec 2007
Total Posts : 362
   Posted 4/17/2008 7:43 AM (GMT -7)   

Okay... here we go!  At work and my manager/boss is being the BIGGEST jerk today.  Not feeling good at ALL and should not be here.  Doc wants me in the hospital, yet I put work before my health - just wired that way.  Nauseated, in pain and my rear is raw!  All doped up on phenegren and pain meds.  Wish I could take something for the D!!

 

So I don't pop off at him, instead I am posting here.  about ready to snap that little weazle in half!!  He is sending me horrible emails to which I am trying hard not to engage or it will turn into email battle - not good to battle on record.

 

911!  911!  Man down!  Man down!! mad   skull mad Feel a little better now that I have ranted here... my only salvation!!


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 4/17/2008 12:40 PM (GMT -7)   
Texan with Crohn's said...
Tsit, you have a good point and I had not thought about that until now. ERs and doctors do have a level of skepticism towards CD. Without medical records and whippin' out a purse (now carry the large brief-size) full of bottles of meds for CD they (medical peeps) always seem to have a look of indifference. Never occurred to me that ANYONE would ever fake CD. ??? nono

I like the come back about "I am still standing even to my amazement" - L O L - It sure beats my canned responses "hanging in there" or on real bad days "I'm doing it." Think I may use that if my boss EVER asks me how I am doing... which I doubt he will. Hell, he doesn't even make eye contact now days because he knows how bad I am at this point. I am in the flare-up from hell... four weeks and counting. I am about to start packing my own TP with aloe vera in my big purse... thought! That would also be a good one to pull out at an ER!!! hehe (keepin' positive... keepin' positive)

Need to start a post on how many types of CD procedures there are after reading the one about the tube. (That one floored me)


You guys have a good day. I've got to get my game face on and get in to work (crining as I gimp on outta here).


-Leslie



one benefit of having an ostomy, I can just pull up my shirt and say, "see....this is for real!"
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 4/17/2008 12:41 PM (GMT -7)   
oh, dustspeck.....

good luck with your new job!
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?


Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 4/17/2008 12:49 PM (GMT -7)   
I know this thread is all about venting, but I have to be the devil's advocate here...who are we calling "jerks" if we're acting, well, sort of jerky ourselves? And aren't we the LAST people who should be questioning whether or not someone else is "really" ill?

Just had to throw it out there. Okay, vent away.
Co-moderator - IBS Forum

Please always remember to consult your medical professional regarding your medical questions; this forum is intended to provide patient-to-patient support. Although some of us have healthcare backgrounds, we cannot diagnose or treat patients on the board.

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