Parents don't get FIBRO/chrionic illness...I feel invalidated...help guys!
#114406 - 10/20/04 03:34 PM
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So my fam is in town. And they DON'T GET IT! My fam is like "I have pain too"...you can't not work...
GRRR! They love me but I htink that they think if I ignore it it will go away. I WISH!
Maybe they can live with Arthritic Pain and Aleve. I don't have that kind of pain.....
Do they have everytihg else I havce? Fibro fog, IBS, chronic sinusitis, sensitvity to smell and sound and bright lights, anxiety, PMDD (very bad PMS that's outta control), etc.? No. and even if they did....their fibro mnight be weaker than mine or less prevalanet or however you say it!
Each person's IBS is different....well, each person's fibro it too.
I LOOK fine. Helathy. But my back is SCREAMING at me in pain right now! It's telling me I've laredady overdone it today just having people over.
I was considering the possibility of moving if hubby loses his job back to FL. But how can I? They don't make me feel validated (not just in regards to fibro.....I didn't want to tell them who I'm voting for or IF I'm voting cause it's not theri business and I need to have boundaries....and they have a hard time accepting that boundary).
I love my fam. But I need to be able to get the support I need from them....espceially if we might end up livinfg 20 mins away from them. And I like Miami (where I'm from)...why should I have to keep it out of the picture?
Thanks for listening...please help me come up with something...I KNOW there's a solutuion here!
Thanks!
Love,
Ruchie
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Formerly known as Ruchie
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Oh! My Mum's nearly as bad. She's slowly getting there, but she still thinks I could just ignore it for the right job or that I'll grow out of it. Hmmm, let me see...how many Fibromites have I heard THAT happen to? Answer: NONE!
Grrr! Drives me mad. I don't think I'm being negative, just realistic. I'm not going to set myself up for a fall.
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and of course when I told this to my mother, she thought I was being a hypochondriac!!! Heh, what do they know! 
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~ Rachel (IBS-C)
If life hands you lemons, make lemonade!!
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Oh No! The response sounds about right though!
I like LS's atttitude. I've been accused of "making" myself worse through doing so much research, etc and thinking about it. But, hey, I think about LOTS of diseases and I don't have THEM! Plus, I had this before I had a name for it!
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Nobody can make you crazy like your family. You can choose your friends but you are stuck with your parents and siblings!!!
It's hard when you can't get the support you need. I remember when I was first diagnosed with depression 15 years ago my mom didn't want me to tell anyone, including my dad, because "it's inappropriate to air your personal problems in public." I love my parents dearly but they have significant limitations in terms of offering me unqualified understanding and support. I have learned to accept that and to have realistic expectation of them. I don't expect them to be what they cannot. And I get my support from my husband, from my friends, from my sisters, from a counselor.
And guess what? I live 9 hours from them and I like it that way. I think the space is good for me.
There are clever ways to repel unsolicited advice and comments:
Listen first
It's natural to be defensive if you feel that someone is judging you; but chances are you are not being criticized; rather, the other person is sharing what they feel to be valuable insight. Try to listen - you may just learn something valuable.
Disregard
If you know that there is no convincing the other person to change her mind, simply smile, nod, and make a non-committal response, such as, "Interesting!" Then change the subject and go about your own business...your way. Don't engage them in an argument.
Agree
You might find one part of the advice that you agree with. If you can, provide wholehearted agreement on that topic.
Steer clear of the topic
If your mom is pressuring you to try a certain diet, but you would never do that, then don't complain to her about food. If she brings up the topic, then distraction is definitely in order, such as, "Would you like a cup of coffee?"
Educate yourself
Knowledge is power; protect yourself and your sanity by reading up on food choices. Rely on the confidence that you are doing your best for yourself.
Educate the other person
If your "teacher" is imparting information that you know to be outdated or wrong, share what you've learned on the topic. You may be able to open the other person's mind. Refer to a study, book, or report that you have read. There must be info out there designed for family members of people with IBS. Print it and have them read it.
Quote a doctor
Many people accept a point of view if a professional has validated it. If your doctor agrees with your position, say, "My doctor said I can't eat that because it would make me ill."
Be vague
You can avoid confrontation with an elusive response. For example, say "I'm working on that." Then change the subject.
Memorize a standard response
Here's a comment that can be said in response to almost any piece of advice: "This may not be the right way for you, but it's the right way for me."
Be honest
Try being honest about your feelings. Pick a time free of distractions and choose your words carefully, such as, "I know how much you love me, and I know you think you're helping me when you give me advice about this, but I'm comfortable with my own approach, and I'd really appreciate if you'd understand that."
Find a mediator
If the situation is putting a strain on your relationship with the advice-giver, you may want to ask another person to step in for you.
Search out like-minded friends
Join a support group or on-line club with people who share your approach. Talking with others who are can give you the strength to face people who don't understand your viewpoints.
BOTTOM LINE IS, NOBODY CAN MAKE YOU CRAZY WITHOUT YOUR PARTICIPATION. DON'T BUY INTO THEIR ATTEMPTS, WHETHER CONSCIOUS OR NOT, TO UPSET YOU.
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Adopt the pace of nature: her secret is patience. ~ Ralph Waldo Emerson
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don't get me started on the family issue....grrrrr
'all dalia needs is a nice piece of cake and a chicken leg' quote, my mother, after 10 years of ibs and trying so hard to help myself...me being the only person that ever tried to help me.
mmmm...apparently I'm a hypochondriac, weight obsessed (that was from so called friends, because I am blessed with a good figure and enjoy and need exercise - jealousy),food obsessed, eating disorder....my own brother doesn't want to ask me how i am when i am going through a bad bout (this summers 4 month stint of endless attacks and no energy) because it would be 'indulging' in my mental disorder!
and then i am told i am 'paranoid' that my family aren't supportive! grrrrr.
the very same brother that told me i was paranoid was unhappy about an argument i was having with my father (about my tummy and how it is totally disrespected) and when i felt an attack coming on and knew i needed a hot water bottle FAST and couldn't open it, REFUSED to open it for me as a form of protest! have you ever heard anything so horrible and mean! grrrrrrrr
so ruchie, i am so sorry your family are disregarding your pain when a good hug and some sympathy would go a long way. thank G-d we all have eachother.
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Feel the fear and do it anyway!
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Hi Ruchie~ families are a trial sometimes, huh?
1st, remember that they are very much like everybody else - if they don't have it, they don't understand it.
2nd, next time they something like "I have pain too, you can't not work," respond: "Would you expect someone with cancer to work? Or how about someone with MS? You have pain, and I have pain, and they are NOT the same!" Ask them if AIDS patients are supposed to just forget they are sick and will magically get better. You have a real health problem. You have your doctor's diagnosis to prove it. Whatever they think of that, you know what's right for you, and you have to think of that first.
3rd, educate them, if there is any indication that they are willing to learn. And even if they aren't willing to learn, make them want to! My grandma was constantly bugging me about eating 'cause she thought I was making myself unhealthy. So instead of argue, I had her read Heather's book. "Read about someone who's been on the floor in pain, and tell me I should eat that hamburger!" For some reason, people "get it" more when they are reading about other people. ?? I don't get that. ??
Anyway, some other suggestions are to have your mom (or someone) talk directly with your doctor. If you explain to him that this is causing you more stress and that you're feeling worse because of it, he should be willing to speak with her. Direct her to some good books and resources about everything you have - could you get the admin or someone of fibrohugs.com to write her an email or letter?
And if all else fails, just don't talk to them about it. They only have power over you if you let them. You will always have hubby and your puppy and of course, us! Remember that the only opinions that matter are yours and hubby's. You are an adult, and they can't run your life!
You're a strong woman, Ruchie, and I know you'll come out okay from all of this! Good luck to you!
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~*Amber*~
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Ruchie I know how you feel! My mom tells me I am a hypocondriac (sp?) and that I am a head case. She thinks if I just ignore evrything it will go away, including the IBS. Or she says I just need a good night sleep. (Ya think!!) She bakes things specifically for me like chocolate cheesecake and brings it to me even though she knows the things I am not supposed to have. She said I have made myself worse since I got a diagnosis.
I deal with her by telling her I had all these symptoms before the diagnosis, i just have a name for it now. I didn't complain about it before b/c I just thought it was normal and things I could deal with. And I tell her I don't complain now I am just making observations. I am more aware of my symptoms but that doesn't mean they are worse since diagnosis. And I told her to research it on the web and she would see how similiar I am to the symptoms and have been for years. She did this and the other day she told me we were going for a walk b/c I need exercise. We went for a walk and it was way to far and I really hurt the next day. She of course said come on you can't hurt from a simple walk. So although she has not totally come around the research she did helped a little. And the rest of the time I rely on hubby for support and try to ignore and not talk about the subject with her.
Focus on you and what your body is telling you honey. Don't listen to outside negative comments, they will just make you feel worse. As always you are in my thoughts and prayers.
{{{{{{HUGS}}}}}}
Christie
Christie
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Christie
~Hoping and Praying for Sleep!~
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oy, Ruchie!
#114723 - 10/21/04 04:00 PM
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jenX
Reged: 08/11/03
Posts: 3252
Loc: Richmond, VA
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Lemme tell ya, I feel bad for you with this.
I am to the point now where I just shrug when people don't believe me or try to invalidate me. I say something like "wow, I wish it were that easy." and then i forget about it. there's nothing i can do to change someone's narrow mind...
you can explain stuff. try to show them the "Letter for Normals" Here's another version. or show them both. and a list of websites and book titles. show them that you're not alone and not CRAZY! 
if that doesn't work, see what you can do to get past it and forget about it. you'll have to make your limits when you're with them, but do things like hand them a map of local attractions (or a coffee house or bookstore) and the keys and say "knock yourself out, 'cause i need a nap. see ya in 2 hours." say things like "sure, i'd love to take a stroll down the street after dinner, but i am not up to it. have fun- i'll sit here on this bench and read a magazine while ya'll walk!" don't say it apologetically if you can help it. be matter-of-fact. you would love to do these things, but you can't. it sucks. big time! but it's a fact and you've accepted it. let them deal!
SMOOCHES!
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Hi Ruchie,
Why are you considering moving again? You just moved to Arizona! Hubby might lose his job? Does HE want to move? Do you tolerate Florida's hot humid weather better than the dry heat in Arizona? Is that it? Or is it that you want to be closer to your family, even though they're not supporting you? Help me out here...
Ruchie, honey, it is a mistake to go through life expecting others to understand what you're going through. It ain't gonna happen, and expecting it from others will just make you disappointed in them and ultimately unhappy with yourself.
On the other hand, a positive outlook goes a long way. Perhaps this is what your family means? If you honestly don't think your family is supporting you, then why move closer to them?
Ruchie, you've been through a lot -- and you've managed it all by YOURSELF. Your family didn't help you. YOU DID IT -- YOU!
You can do this, you know you can.
{{{{{{Hugs}}}}}}
Your Number One Fan
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<img src="http://home.comcast.net/~letsrow/smily3481.gif">Bevvy
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Ruchie-
Lots of hugs.. sounds like my mother... she doesnt' get why I am concerned about IBS or going on this "wacky" diet because she has crohns= and I must too, and this isn't the right treatment- forget that I'm feeling better and they have tested me and I DON"T have what she does!
anyway- her life choices are very different from mine and she can't understand a house that isn't cleaned to her level of expectations every day and has things cluttering it up because we like having them around and USE them... and that because we both work wierd hours we've made a conscious choice to not waste time on things like weekly (or in her case twice weekly) grocery store trips to make sure she doesn't have to store anything, rather going more like once every 3-4 weeks since DH can live without a lot of fresh fruits and veggies and I do better without them anyway... and storign food int he house is thus a priority to us because we so rarely see each other.. she doesn't understand it at all.. but then she wanted me to stay unemployed (when we couldn't pay the bills and eat and ran up credit card debt which we hinted at byut never mentioned numbers to them for) and go back to school and get retrained rather then finally take a job in my field of expertise that paid half what I was making before but still a lot more then unemployment... and now- 18 months later we are finally out of debt even with that lower income and are looking at living out of a suitcase for awhile to come. DH had to make a therapist appt after mom and dads visit AGAIN because they were complaining about our lifestyle even more sinc ethis time they were helping get the house set up...
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Dietetics Student (anticipating RD exam in Aug 2010)
IBS - A
Dairy Allergic
Fructose and MSG intollerant
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