Sticking up for yourself

New Topic Post Reply Printable Version
32 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 9/1/2008 5:57 PM (GMT -7)   
There is a member of my family who believes my Crohn's isn't that bad and that I can be "healed" through diet.  To be honest, I am very sick of having this individual tell me what he thinks would be best for me.  He downplays my illness and treats me poorly.  He believes I am overmedicated and has even tried to convince the rest of my family that there is really nothing wrong with me.  So far, the rest of my family has not sided with him, but I hate to think of losing the support I have. 
 
It upsets me because how can anyone judge what I feel and go through unless they have been there??  Sometimes the pain from my Scleritis is so horrible I can hardly stand it.  Sometimes I am stuck at home, either from fatigue or because I cannot be 5 minutes from a bathroom. 
 
Any ideas on how to kindly "put someone in their place"?  I have never been one to stick up for myself, and I feel it is now time. 
 
Thanks all!

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1445
   Posted 9/1/2008 6:11 PM (GMT -7)   
Ask him if he has scientific studies to back up his argument that you would love to see them so you can discuss with your dr.
Dx'ed in 1999. No surgeries.

Current meds: 75 mg 6MP. 3mg prednisone (trying to taper). Udo's Choice Probiotics (30 billion).


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 9/1/2008 7:00 PM (GMT -7)   
I would just say "Uncle Mike, you have expressed your opinions many times. Unfortunatly they do not coincide with the opinion of the medical community or my reality. I would appreciate if you refrain from telling them to me again. Additionaly, please stop trying to turn other family members against me. Their support is important to my health. You do not have to believe it yourself but please, keep it to yourself."
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 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 also take a birth control pill to allow some fun in my life.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/1/2008 7:02 PM (GMT -7)   
Or just say "bite me!"

:)
My bum is broken....there's a big crack down the middle of it! LOL :)


patientspiders
Veteran Member


Date Joined Jul 2005
Total Posts : 733
   Posted 9/1/2008 7:13 PM (GMT -7)   
That's a nasty situation... what Fitzy said sounds good, but I don't know if I would have been able to say that...Rider Fan's suggestion was good too... I'm such a chicken when it comes to standing up for myself! In the couple situations where I did have some friction with people, I actually resorted to YouTube... I e-mailed the person some videos of other people with crohn's and doctors and such... there's so many useful clips out there, maybe there is a "televised" way to address the problems that you're having with this person.
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Currently running on Humira and Hope.
(miscarried at 13 weeks, now waiting to heal before trying again)

"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."

~Marianne Williamson


sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 9/1/2008 7:14 PM (GMT -7)   
No kidding! I have a couple of those people in my life too. It's really frustrating, especially from people who ought to be in a supportive role. It's unfortunate that you even have to stick up for yourself, but I agree that explaining to him that the medical community and IBD specialist disagree with his stance. Maybe you can let him know how disrespectful it is. Do you have a closer family member that you can discuss this with?

Hang in there! It's hard enough to deal with Crohn's let alone the ignorance of others!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--methylpred - finally off 6/15/08, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-yr-old girl


kam#7
Regular Member


Date Joined Jun 2008
Total Posts : 125
   Posted 9/1/2008 7:56 PM (GMT -7)   
Everyone has their own way of dealing with people. I found this particular approach very effective - now, it might be too graphic and too much info, but it ALWAYS works:

When someone talks about too much medication or eating better, here is what I say:

Oh, you must be thinking of IBS, I have Crohn's Disease (Inflammatory Bowel Disease). It is an autoimmune disease...It is like Multiple Sclerosis of the digestive system. You see, my intestines are fighting against themselves...I get ulcer-like sores in my digestive tract. As you can guess, this can be very painful. Imagine a piece of raw broccoli making its way through all of those sores - OUCH! On top of that, I have to deal with excessive diarrhea which leads to a whole host of other issues. Have you ever had the stomach flu? You know the cramps? The dehydration? You know how it takes a few days to get back to normal? Yeah - that is what it is like, but all of the time. Of course, the icing on the cake is all of the secondary issues...joint pain, eye issues etc...I could go on and on, but you get the picture. I am just grateful that I am not dealing with X (you fill in the blank)...for me it is "I am just grateful that I can still work and that I have only had to have ONE surgery so far..."

Maybe this approach is a little too late for this situation, but I have to tell you, graphic detail really tends to shut people up....I should say that I have a pretty strong personality, so this comes pretty easy to me.
35 year old female - Diagnosed w/Crohn's 2002 - Surgery 2004

Currently taking: Pentasa, Entocort, Imuran, Immodium, Zoloft, Wellbutrin, Seroquel


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 9/1/2008 8:10 PM (GMT -7)   
Kam - I love it, and it gives them the benefit of the doubt by saying "Oh you are confusing this with IBS lol."
26 Year old married female law student (last year!!). Diagnosed w/ CD 4 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 also take a birth control pill to allow some fun in my life.


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 9/1/2008 8:43 PM (GMT -7)   
I hope you've shared this with your family the way you've shared it with us. It sounds like the rest of them are very understanding, and if you've expressed these concerns to them then it should solidify that already strong support.
Whoever is saying that to you has absolutely NO right. They clearly don't know what they're talking about and I'm sorry that you have someone like that in your life. I can't really add more than what the rest of the members have all suggested. Maybe let him read these forums sometime. I've been told by multiple doctors the exact OPPOSITE of what he tells you and these are people that have spent years specialized in Crohn's and other autoimmune disorders as well as having tried the medications and diets themselves. You have scientific evidence, testimonials from patients and doctors, and many resources on the disease at your disposal. All this person has to back up his claims against you are his deluded opinions and lack of experience. Definitely take advantage of that. All you need to start with is to know that he couldn't be more wrong.
20 years old, Diagnosed with severe Crohn's and colitis in May of 2008.
Currently taking:
Prednisone, pentasa, alinia, bentyl, prilosec, tandem plus, and the occasional ultracet
Surgery for ectopic pregnancy(very possibly due to Crohn's inflammation) in July of 2008.
Due to start Imuran September 17 depending on blood results.


lilturbo
Regular Member


Date Joined Feb 2008
Total Posts : 298
   Posted 9/1/2008 9:52 PM (GMT -7)   
I'm really sorry you have to go through this. It is insulting and annoying. I don't do well with ignorant people.

BUT I did have the same problem with my mom (she was in denial). Every time I got sick or was hospitalized she thought I did it to myself by eating poorly or simply not taking care of myself. She didn't quite understand (and it took me a while too) that when your body decides your going to flare, your going to flare, regardless of what you do.

My family didn't quite understand how severe this disease could be, so I started a blog that I update with my condition, medicines, dr's visits, etc etc. It has really educated my friends and family and a few other random peeps that actually look at it.

Again, I'm really sorry that you have to put up with this. Especially from somebody in your family. Just tell him how it is and tell him to do his research and quit being so ignorant. It makes me so angry...gggrrr!!

Take care of yourself and please keep us updated!

-Emma
turboemma.blogspot.com/


Keeper
Veteran Member


Date Joined Jun 2008
Total Posts : 1058
   Posted 9/1/2008 10:10 PM (GMT -7)   
The problem is that this person probably has done some research and if you start down that road, you'll just be feeding fuel to the fire. There are lots of opinions about Crohn's and since they really are not quite sure how it starts, every hedge doctor has an idea - and no-one can say he's wrong!! You just have to say that you are sticking to the treatment that you have decided to follow and you don't have the time or energy to spend following every idea that comes down the track. You can cite some of the messier problems that have happened to people who were without treatment - emergency resections are always something that people can understand that you might want to avoid. But really, you just have to tell him that you already have a real doctor.

Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 9/2/2008 12:51 AM (GMT -7)   
I have one, well actually several, in my family. But one in particular has been having health issues for several years, no one knows what is wrong with her, but she also doesn't want to just treat "symptoms" without a diagnosis, so she won't take any meds. For years she has been on me about why I take this med or that med, why don't I just eat healthier food and take lots of vitamins, stop taking all the medicines and see what happens...... So now that her doctors think that she has Lupus, she wants to be the only one that the family gives their support to. She started arguing with me that CD wasn't an auto immune disorder, and then she was going on and on about her ANA levels and how they are high. I say that my CRP and ESR are raised and always are because of my CD. Its just to be expected if you have a chronic illnesss. Nope can't be according to her. But she is so against trying any of the meds for lupus to see if they help, since they aren't 100 percent sure it is Lupus, that she just keeps getting worse. After she and I had our chat and I was just getting more and more frustracted because she obviously was trying to show how much sicker she is than me, like its a contest, she sought out my husband to ask him what meds I was on and make sure that I wasn't telling her lies to make myself look sicker than her! I had lost a lot of weight (70lbs) since the last time I saw her, well it can't be because I was sick and in and out of the hospital for a year, or that I am finally down to almost nothing on Prednisone and only about 10lbs heavier than when I started on the evil drug. NOOOOO its because of Topamax. She never knew me except as a person who took high doses of prednisone, so she has no idea that this is the size that my body has always wanted to be. For her, this is a contest, and she wants to be the winner, but isn't the prize then, that you are sick, very sick. I think I would rather lose.

So I will be treating her like the rest of the family members who "think" they are helpful, when asked how I feel, "I'm feeling pretty good today thank you, how are you". End of conversation. Even if I am ready to drive myself to the ER, that will be the pat response.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 9/2/2008 7:03 AM (GMT -7)   
Guys, it's not a competition. It takes two to fight. Maybe you need to stop trying to convince this person -- either that you are sick or that they are wrong. It really doesn't matter.

First you have to ask yourself what is your investment in the relationship dynamics. Why is it so important that this relative validate your experience? Honestly. I know that we all want and need support when we are ill, but ... when it isn't there, why do we make it our problem to solve.

Your relative has issues. Maybe it is fear. Maybe it is jealousy. Maybe your relative is just a self-centred, narcisstic egotist who only sees the world through one lens -- his/hers. But let them own their issues. It really doesn't matter what is driving your relative to react to your illness in a dismissive negative way. What is important, what you can control, is how you choose to deal with it. I suspect that the day you no longer give your relative the power to hurt you, is the day she/he will stop hurting you.

Here's my piece of advice. Every time you are subjected to unsolicited advice, comments or observations from this person -- kill her/him with loving compassion. Turn the problem back where it belongs. Commisserate with your relative.

"Gosh, isn't it frightening when someone you love is in the kind of pain I've been experiencing?"

" You must feel powerless to know how to make a difference."

"I understand that you are trying, in your way, to comfort me. I know how difficult it is for you to find something appropriate to say. It's so difficult to feel empathy for something you haven't experienced."

Get creative. Make it a game. You will be amazed by the impact your change in attitude will have on the situation. It may not do anything to change your relative's mind, but you can really feed on the power you will gain by refusing to engage.

When all a person really wants is an argument, the most effective thing you can do is choose not to engage in the argument. Really! Gandhi was right.
Belleenstein:

30+ years living with Crohn's.


MishBall2
Regular Member


Date Joined Apr 2007
Total Posts : 345
   Posted 9/2/2008 8:54 AM (GMT -7)   

I doubt I'll be able to convince you (as it took many years of learning on my behalf), but I tell you that once you learn to speak up for yourself your life is simpler, happy and much less stressful.   

My husband is very outspoken and being married to him has taught me to speak up for myself.   Honestly it started out as I'd rather speak up for myself than listen to him chew me out for letting people walk all over me.   Over time, I realized that not speaking up was eating away at me internally.   

Good luck.  :-)


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. 
 


mommaduck
Regular Member


Date Joined Aug 2008
Total Posts : 47
   Posted 9/2/2008 9:58 AM (GMT -7)   
MishBall2,

I agree with you totally! I have the same type DH! But when I started learning to stand up for myself (I'm still learning), he actually went from getting all over me for not standing up, to praising me for saying something. It was a double reward. And God knows we don't need things eating away internally - there's too much going on in there already =O)
m4dcks
d12-87, c11-93, k11-89, s12-95


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 9/2/2008 10:34 AM (GMT -7)   
First, I 2nd pb4's response. :)

Second, family members like yours is EXACTLY why I have held off on telling many people about my Chron's - particularly people in the building I work in. I can see MANY people I work around thinking the way your family member thinks. I can be feeling great, energetic and smiling/giggling one minute and then turn a certain way and my bowels begin raging and then I'm sick the rest of the day or maybe just for 30 mintues or so. It's UNPREDICTABLE. The uncertainty of this disease is frustrating.

I can see people saying, "She can't be that sick. She's faking her sick leave. She ought not eat THAT. They've got her on too many meds." etc. etc. If I knew someone who said that stuff about me I'd be all up and down in their face throwing out details of this illness that would HOPEFULLY put them in their place...like never knowing when you're going to vomit? Like never knowing if you're going to be able to make it to the bathroom in time? Like being woken up every hour in the middle of the night with D? Like mouth sores, joint pain, muscle pain, painful FATIGUE, fistulas, surgeries, bloody D, swollen ankles to the point a wheelchair or crutches are needed, colonoscopies every couple of years...everyone on this board knows that list goes on.

I don't want anyone telling me my disease can be cured by eating the right things. Could it be? Maybe. But there is no definitive proof. I mean, I ate plain, baked salmon at the first of January this year and went into a 7 month flare the day after so WHO KNOWS?! But during that 7 months I had a couple of good days and do you know what I ate on THOSE days? MOE'S SOUTHWESTERN GRILL BILLY BAROU NACHOS and it didn't bother me ONCE!
Diagnosed in October, 2004 at age 32.
36/F/SC
Current Rx's: Colazal (generic), Nexium (generic), Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills, Chromium Picolinate
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date


MishBall2
Regular Member


Date Joined Apr 2007
Total Posts : 345
   Posted 9/2/2008 10:42 AM (GMT -7)   
Kitt, I've been lucky at my previous job there was another person with Crohns and one co-worker with a relative with Crohns. At my current job there is another person with Crohn's and two co-workers with children who have Crohn's (and that is at a company with <90 employees).

My boss is very understanding and has agreed that I should get a laptop so that when I go home sick but am fine 2 hours later I can work from home.
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. 
 


aoccc
Regular Member


Date Joined Feb 2005
Total Posts : 455
   Posted 9/2/2008 12:24 PM (GMT -7)   
for the right price i can make him "go away"...message me for details :)
SCD since 01, remission since 01, occasional Arby's breaks :)


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 9/2/2008 12:25 PM (GMT -7)   
sometimes it is best to use the advice I give those with teenagers (after raising my own). when someone is being difficult, you can always just say "hmmm" and go on with the day. there is little anyone can come back with after a well done "hmmmm."
49 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. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


map lady
Regular Member


Date Joined Feb 2008
Total Posts : 154
   Posted 9/2/2008 12:30 PM (GMT -7)   

Heh, kam's post gets my vote.  It is similar to what I tell people (It is like having food poisoning AND the flu but they never go away) only much better in detail and would shut up pretty much anyone.

I haven't talked to my parents in years because of the punitive treatment they would give me for being sick.  They had been really cruel about me being sick before when I had problems with migraines and vomiting.  I called them up to tell them that I don't get sick anymore because it turns out I all of those problems were because of allergies.  I was getting migraines all the time because almost every food I ate contained something I was allergic to (monosodium glutamate) and gave me migraines, and then they would give me Excedrin for my migraine, which contains Tylenol, and it turned out I am allergic to Tylenol and it makes me vomit myself into unconsciousness.  I told them I don't get migraines now and I don't take anything that has Tylenol so I'm much better and......all they did was criticize me and make comments about how I was just sick for attention.  I never called them again.

Last month they e-mailed me and said they were worried about me and missed me and didn't want me to reject them.  I told them that I really love them but they were so mean to me before about being sick, and now I am even sicker than ever and will never get better.  I told them they would probably be embarassed about my health and not want to talk to me, but if they could not criticize me or put me down for having an illness I would love to talk to them.  They didn't reply because apparently that is too much to ask.  I didn't mention poo or anything, just "sick and will never get better" and that's enough to earn not being spoken to.

Sure, they're my family, my parents even, but if they can't be decent to me I won't talk to them.  If anyone has some jerk in their family who wants to humiliate them or criticize them or boss them around about their illness, let them know that you will not accept their inconsiderate treatment and lay out an acceptable way that you would like to be treated.  If they will not treat you kindly, don't talk to them.  It's much less stressful to ignore someone who wants to hurt you than it is to try and convince them to stop hurting you.  Other people will see that you mean business and will either shape up or ride the Ignore Boat with the jerk people, which makes things easier too.

Good luck, I hope your mean relative stops being hurtful.


indigosunrise
Regular Member


Date Joined Nov 2007
Total Posts : 497
   Posted 9/3/2008 10:48 AM (GMT -7)   

Thank you everyone for your replies!!

This is some great information!  I will be seeing this individual this weekend and I intend to do something about it if he says something, which, I am sure he will, because to NOT say something isn't in his nature.

I cannot predict exactly how things will pan out.  I do know that if he talks about it to other family members, I AM going to have to do something.  I cannot lose the support I have. 
 
I will keep you all updated and let you know what happens!
 
Thanks again for your replies and awesome support!!!  :-)

Olive J
Regular Member


Date Joined May 2007
Total Posts : 83
   Posted 9/3/2008 11:29 AM (GMT -7)   

There is this story about “the spoon theory”  I don’t have it but I am sure there is  someone out there who might have it.

 

Believe me, it’s more than powerful, I might work on your family.


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 9/3/2008 11:37 AM (GMT -7)   
Oooh, yeah...Google The Spoon Theory. It's about a woman with Lupus (I believe) explain to her friend withOUT a chronic illness what it's like to actually HAVE a chronic illness. But the "theory" works on ANY level of chronic illnesses.

Of course, the way your family member seems to be, he probably STILL wouldn't get it after reading it. No offense. :)
Diagnosed in October, 2004 at age 32.
36/F/SC
Current Rx's: Colazal (generic), Nexium (generic), Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Vitamin A, Calcium-Magnesium-Zinc, Cranberry pills, Chromium Picolinate
Secondary conditions: mouth ulcers, joint pain, swelling ankles, extreme fatigue
Previous/occasional Rx's: 20mg Prednisone taper, Flagyl, Levaquin
No surgeries to date


Olive J
Regular Member


Date Joined May 2007
Total Posts : 83
   Posted 9/3/2008 11:52 AM (GMT -7)   
The spoon story!!! Enjoy but take note.

****************
Sorry, but I've had to edit your post. We have a rule against super-long posts at HW, and we also need to respect copyright by not copying and pasting original works onto the forum.

Ivy.

Post Edited By Moderator (ivy6) : 9/3/2008 5:17:48 PM (GMT-6)


78SilvAnniv
Regular Member


Date Joined Apr 2008
Total Posts : 289
   Posted 9/3/2008 5:02 PM (GMT -7)   
I read that story this afternoon, just came back because I wanted to read it to Hubby, but it has been edited.
I thought it was a wonderful story.
May Olive J post a link?
I have the ability of single-minded determination and accurate project focu....Hey, look, a cat!
 
Crohn's and UC are pretty darn crappy, but if you can't laugh at yourself, you'll cry. 
I'd much rather laugh.
2001 Dx'd with UC.  No remission.  5/2008 surgery, removal of 6" of left side colon.  Dx changed to Crohn's.  Remission for 8-9wks after surgery, symptoms returning after resuming 6MP.

New Topic Post Reply Printable Version
32 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Saturday, December 10, 2016 7:36 AM (GMT -7)
There are a total of 2,735,829 posts in 301,337 threads.
View Active Threads


Who's Online
This forum has 151440 registered members. Please welcome our newest member, peggaeaul.
267 Guest(s), 8 Registered Member(s) are currently online.  Details
tickcheckguy, pasayten, 1000Daisies, fibrocushie, ChickenArise, Auroracousland, straydog, Kristvet86


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer