Stigma-ed by IBS, eating disordered label
#98024 - 08/13/04 09:33 AM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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I can really relate to what Vicam posted about her doctors:
Vicam said:
Quote:
Sadly, they're sort of treating me like an eating disorder case, which makes me really mad because I asked for help so many times from the other doctors, and was upfront about what I was and wasn't eating, and none of them helped me, and eating disorder people generally hide it.
[Nelly jumps up and gasps: YES! I CAN RELATE!]
Thank you Vicam, so much for your post.
Did any of you have this in your late teens or early twenties, and were handled like you had an eating disorder like anorexia or bulimia? How do you overcome that with your loving, well-meaning supporters?
I had the hardest time when I was 19 and had my night IBS-D attacks. I quit college and moved home because of them. I couldn't keep anything in my system and would emerge half-starved from a night of constant explosive D with ravenous hunger. During the day, I just wanted to eat whatever was around to get rid of the sucking, empty feeling in my gut, even though I knew that I'd get sick as a dog as a result.
When my first doc (evil GI man) saw me, he made the armchair analysis in 10 minutes that I must be bulimic.
I have to admit that if it isn't happening to you, it's hard to explain it to someone without it sounding like bulimia. It didn't help my case that I was young and underweight (so no credibility), and had all this anxiety and stress from the IBS and loss of sleep. And it was being explained to him by my mother, who although meaning well, just didn't have all the facts.
I actually had this first doc tell my mom to report to him if I showed "any more" signs of bulimia… and it didn't do anything for my credibility with my mom, I'll tell you that.
To this day she doesn't believe that I have IBS, even though I've had my recent doc sit her down and tell her that IBS was what is causing this behavior. I'm 33, and it's like I'm 19 and in that first doctor's office.
It doesn't help my case that these "signs" actually help me: hypervigilance, monitoring food intake, eating at home, being close to a bathroom, talking about "triggers," etc...
~nel~
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I can relate in a way too. My MIL thinks I'm overstating my illnesses (fibro and IBS), that I'm too self-absorbed, and that spending time on these boards reinforces my illness, preventing my getting better. Her solution?? I should get out more, go to the museum, develop other interests. Hey, if all it takes to cure us is to go to a museum, we could make a fortune here -- talk about a miracle cure!! Whaddya say, shall we form a business and start peddling MIL's cure to the masses??!! Or maybe we could just license it to Heather and Will!!
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Laura
Keep it simple!
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I'm only 21, but I'm also a very small person, so people assume I have an eating disorder. It was really hard my senior year of high school when I developed IBS and didn't want to eat, or couldn't eat certain things, and people began to think I was anorexic. It's actually gotten better since I've been in college, I have very supportive friends, and my parents understand more now that my mom and my youngest brother (he's 15) have developed IBS in the past year. It used to be that my mom would never understand what I could and couldn't eat, and would have family gatherings with food I couldn't eat, then yell at me for not eating. Now she understands and it's much better.
But I completely commiserate on the eating disorder accusation, though it was never a doctor. *hugs*
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Melissa
Friendship is thicker than blood. ~Rent
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Oh, thanks so much for the hug!
My mom makes me food when I visit her, and it's so hard for me because I pick around the plate, eating what I can. She completely emotionally blackmails me with food, asking my why I don't finish...she went through all that trouble to make it, etc.
Tell your mom she rocks!!!
~nel~
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OMG, I have heard all of those "suggestions" before!! The museum obvoiusly has some elusive miracle cure, hiding in the egyptian exhibits somewhere...!
You've cheered me up, LS!! 
~nel~
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My mom can't understand my eating situation either although I've explained it till I'm blue in the face. I'm middle aged & she is very old. She thinks I'm just picky or overdramatizing this whole thing. I know my IBS is related to other things like anxiety etc & she said to me the other day, "for someone so young, you sure have a lot of things wrong with you" in that tone like it's all in my imagination. It's very hurtful to me but what can I do.
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I usually say I'm in an IBS support group which I feel this is. We don't have to see each other face to face to help each other. 
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Nel, that's it, it must be the mummy dust!! Ewww.
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Laura
Keep it simple!
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I kid you not, my boyfriend says, "For someone so healthy-looking, you sure have a lot of things wrong with you." I gasped when I read your mother's quote, Crampgirl. It's almost the same. Unbelievable.
~nel~
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LauraSue you haven't had D for many months. How can MIL say the board isn't helping you. You are doing an incredible job controlling your IBS with diet change, plus you have helped so many other people.
KEEP UP THE GOOD WORK!!!
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Some of you are young and very thin, so your moms or mil will worry about an eating disorder. There is alot of pressure for young women to be thin and for a parent it is scary to see their daughters become too thin. It is understandable your moms will push food on you because they are scared of losing you.
I was hospitalized for an eating disorder at age 19 and it is a real and scary thing to suffer with. People die from eating disoders or end up with life long medical problems. Having gone through a real eating disorder I can understand why your moms are afraid.
That said, my suggestion is print articles from Heather's website that you feel will help your moms better understand what IBS is. There isn't alot of media stories that talk about our bowels. Who wants to talk about bowels?
Keep reassuring your moms that you desire to eat. Print you favorite recipes and give them to your moms to try, but don't tell them the recipes are IBS safe. Make a meal yourself that includes dinner and a dessert. When you go home bring your own snacks along.
It will take you going the extra mile to make them understand you have a real disorder called, IBS, and not an eating disorder. Remember there is more attention drawn to eating disorders than IBS.
Good luck. 
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Thanks so much for the words of encouragement, Barbara. My MIL has "issues." Illness or weakness of any kind terrifies her but she can't admit it. So instead she blames the person who's sick. Some people will unfortunately just never get it no matter how many times you explain because their own hangups make them totally irrational on the subject. She just can't hear me. Doesn't mean I'm going to stop talking though!!
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Laura
Keep it simple!
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For BarbaraS
#98391 - 08/15/04 08:09 AM
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Nelly
Reged: 08/06/04
Posts: 4381
Loc: Within stray mortar fire of DC
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Excellent post, Barbara. I've never stopped to think what it must be like from my mom's point of view. I know she is scared-- I'm scared too-- but it must be doubly-bad when all you can do is observe.
I'll try to get her into some new recipes so she can be part of the solution rather than just an observer of the consequences.
Thanks again,
~nel~
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Ditto here! My parental unit is convinced that if I am "still" sick, it's because I won't do what's necessary to get well!! She blames me as the culprit of my own sickness too...
Thanks so much, girlfriend! It helps to hear it from someone who KNOWS.
~nel~
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Both of my parents are medical professionals (Dad's a doctor and Mom's a nurse) and I always felt like I was missing out on something because unless you're literally dying there is no sympathy from either of them. I'm only eighteen but sufer from many chronic illnesses and all I've ever wanted from them was a hug when I'm feeling like [censored], not the lectures and clinical-sounding advice they seem determined to give me at every opportunity. I'm new to the IBS boards although I was diagnosed over 2 years ago so when I ordered the books I had them sent to my parents house even though i've been living at school all summer. My Mom read the books and called me that night, and ever since she's been a lot more understanding and supportive. My Mom's always had trouble remembering what I can and can't eat, but since she read the books, she's been calling me with suggestions and promised to take me on a IBS safe-food shopping spree when I get home next week. My suggestion to everyone else is to try and convince your family members to read Heather's books. Its made a big difference for me and even my obnoxious older brother is being much nicer to me and has finally stopped accusing me of "faking" illness to get out of doing stuff.
Meg
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You are SO WELCOME, Nel! Glad I could help. Yeah, talk about "blame the victim." That's so hurtful. Isn't it great to have a place like this where other people actually "get it"!
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Laura
Keep it simple!
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Yeah. This place and you guys are lifesavers, that's for sure! I really thot I was alone...!
~nel~
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Meg, that is so great! Yeah, same thing with me with my fibromyalgia. I had my husband read "The First Year" book for fibro and after that it was like a 180 degree change in his attitude and understanding.
I'm very much in favor of all of us educating as many people as we can about all our illnesses. It's the only way things are going to change. In the 50's no one talked about cancer or mental illness and that has totally changed. Time for the same change about chronic illnesses and invisible disabilities. Right, sistahs?!
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Laura
Keep it simple!
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Barbara,
you hit that right at the spot. My mother has been battling colitis(IBS) for several years and also had H-thryoid disease.She has a overwieght problem and she still eats very thing she wants and ignores the problem. Well I'm not hat way and she is just now starting to realize she needs to change her diet. When I went to my folks house a couple of weekends ago, she fixed me eggs(with susbtitute) and turkey bacon and so forth everything was pretty IBS safe.
Then she convienced me to try a small spoon full of Tapica puddding at a resturaunt and by the end of the evening well you can guess a bout of D. Now she understands what I mean.
I don't have a eating disorder I have IBS. So just like many moms out there I'm one too our first instinct is to feed our children. Thank you Barb for the support, If it wasn't for this board I would be still battling to eat.
Sherri
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That's a really good suggestion, too. As soon as I have my official IBS diagnosis, I'm going to print off some materials and send them off to my brothers & parents - my mother, in particular. I'm lucky in that my family, as a whole, are understanding of "whatever it is that's bothering me", but I still don't think they quite understand why I don't just eat more and get better, you know? Great idea, Meg & Laura.
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I get the "faking illness" accusation too!! I don't look sick (not underweight, etc.) so it's hard to get around the people who will generally think I'm acting lazy.
~nel~
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Nel,
I have a hard time convincing people I have a digestive problem because I'm overweight. I have some metabolic problems and have been on so many different meds over the years that led to massive weight gain. It was so hard to hang out with my friends since they always had pizza or some other equally unsafe food and they couldn't believe that I was always gaining weight since the only thing I ate in their presence was vegetables. Eating at home was hard too, since my brother still insits that my parents should cook like they normally would even though I can't eat any of it. He complains about suffering just because I'm sick. Somedays I wish he would get some nasty disease just so that he could understand how miserable my life has been for the past five years (I know, not nice, but I can't help feeling the 'why me' syndrome whenever he starts acking like a jerk.
Sorry, just needed to complain. You guys are great, I'm so happy I found this site since my parents won't let me complain. They feel that if I keep focusing on my problems I'll never get past them, blah blah blah. Sometimes you just need to vent! Why can't 'normal' people understand that?
Meg
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I've been referred to as a "sickly person" by relatives which of course I just love.
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I hear you big time, Meg. No one ever lets me complain here either, and I can't count the number of pizza parties I've made myself sick over, telling myself I'm so stupid, why did I eat that crap, I'm so sick now and it's all my fault. I've wished horrible diseases on all of my friends so that they'd know the pain I was going through and delighting myself with the image of them suffering (insert maniacal laughter here).
But it's all about the idea of suffering alone, that you *can't* make them understand. I really appreciate coming here and letting it all out. Rant away! I love reading the messages here because I am there and totally get it.
They say pain deepens empathy and hones your intellect and sense of humor. Down the line, those horrible people who peaked at 17 are going to be big nothings in the personality department. I've got a cousin who fits that description and let me tell you, it was hell growing up in her shadow, and now it is sweeeet being compared to her.
All my best,
~nel~
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Yes, I too am "the sickie" which just makes me act as "normal" as possible (no, I'm fine, the food's great, thanks), and then I pay the price for it afterwards. I hate being the sick one.
~nel~
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