Family doesn't understand
#283707 - 09/24/06 07:19 AM
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Since I have been diagnosed with IBS, I have had to cancel many things with my family because I was having a bad day and didn't want to go out in public.
They don't understand what I am going through and get very upset and now they don't even bother asking me to go out or come to see me at home anymore.
Does this happen to a lot of people with this disease? If so, how can I make them understand what is going on and that I am not refusing just to be mean...
Having a hard time with this and would love to hear from others who are going through this same thing...
Marilla 
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hi I'm really sorry you are having to go through this cos it's during the rough times that you need extra support.
have you tried sitting down with them and explaining what's going on, how bad you feel with all the pain and stuff, also let them now how much you need them around and to be supportive.
Maybe their lack of support is due to lack of understanding about ibs.
So my advice is to have a really good chat with them, you might want to make a note of what you're going to say and have answers ready to any questions they may ask like about the diet and what you want them to help you with etc
Hope you have success with this
Godbless
xxx
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For many years I had the same problem with my family. It took me a long time to convince them IBS was not a psychological problem or the ranting of a hypochondriac. Even to this day they don't understand my dietary requirements. Sometimes I show up for a family event and find there is very little that I can eat 
There are many good source of information on the Internet such as Heather's website that you can point them to gain an understanding of the difficulties of dealing with IBS. Other good authorative sources of information are
http://digestive.niddk.nih.gov/ddiseases/pubs/ibs_ez/
http://www.4woman.gov/faq/ibs.htm
http://www.nlm.nih.gov/medlineplus/irritablebowelsyndrome.html
Education and patience is a good way forward.
Hang in there.
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STABLE: ♂, IBS-D 50+ years - Science of IBS
The FODMAP Approach to Managing IBS Symptoms
Evidence-based Dietary Management of Functional GI Symptoms: The FODMAP Approach
FODMAP Chart & Cheatsheet
The Role of Food & Dietary Intervention in IBS
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I know exactly what you are going through. While my hubby & children understand (they see my with my attacks), my parents & father-in-law still think I'm on some new kind of diet. They don't understand and probably never will. I too have had to back out of family events due to the IBS (my niece's graduation for one).
When going to anyone's house I usually bring my own food. That way I can eat with everyone else and still have something safe. Restaurants are another matter and I usually just don't eat. We were at a family reunion last weekend and everyone was wondering why I wasn't eating, so I explained many, many times that I have IBS & certain dietary restrictions and that I don't eat unless I know the food is safe for me. It's better that way.
Hang in there! When you need support that you aren't getting elsewhere, just logon here - we'll help you. Have a good day!
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Robin
IBS-A
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I want to thank everyone that has responded to my post re: "My family doesn't understand about IBS" You don't know how badly I needed to hear from others who have the same problems. When I read your reply's, it seems that you are living the same devistations that I am. Somedays it is horrendous and I don't know if I can get through till bedtime when I can just go to bed and cover up and forget the world for a few hours. You have been a blessing for me and I thank you again for your concern. I guess the saying is true, we have to take care of each other and you have certainly done that today for me.
Thank You!
Marilla 
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Hi Marilla,
How is the IBS diet going for you? Are you taking any fibre supplement and probiotics?
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Hi Gracie, Yes I am taking a tsp. of unprocessed bran in my oatmeal every night. It seems to help keep me regular. Also I eat 2 graham crackers at night before I go to bed. I have not taken any probiotics yet. What works for you?
Thanks for asking,
Marilla
Edited by Marilla (11/06/06 12:44 PM)
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I've been using ground flax seeds, or Fibresmart from Renewlife, but I just ordered a can of acacia to try out. I also use probitoics which I think is a life saver. It helps to put back the good bacteria into your digestive system.
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Believe me darling - I understand what you are going through. I have had IBS for 14 years (diagnosed). My family is just beginning to understand what I go through everyday. I think it took for me getting really sick again this Feb and nearly hospitalized for weight loss for them to realize that I'm not a picky eater, I'm not faking it, it's not in my head, etc.
I can suggest you tell your family to read posts on this site, if you have the hypno cd's there is also a cd for family, friends and care givers. (I haven't listened to it myself, but Michael Mahoney's hypno cds are awesome and work for me.)
I know it is hard to make someone else understand what you are going through. After 8 years together my husband finally does - he had a bout of something earlier last year and totally can sympathize with me now.
I hope things improve for you!!
HUGS!
Cassandra
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up!
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The difficult thing with our disease is that it is not traditionally a widely accepted ailment. It's only recently that our disease has a name. So, I understand when my parents and grandparents and friends raised the skeptical eyebrow when I first began telling them about my problems. They didn't buy into it at first and thought it was just a new hokey thing I'd decided to pin my condition on.
But after my parents saw me in the midst of a horrible attack they began to believe. I bought a copy of IBS the First Year and EFI for my parents and made them read it.
It's definitely something that your family should learn to understand in time. In the meanwhile, focus on healing yourself. They'll come around 
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I know what you mean. Usually it's because they don't understand the disease or don't understand that there are still things doctor's can't do anything about. Everyone I know that knows I have IBS has asked me, "Isn't there something they can give you for it?" They mean well though. It's a hard thing to understand.
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Courtney (IBS-D)
"Do your part to live in peace with everyone, as much as possible." Romans 12:18
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Hi Marilla,
I'm so sorry to hear that you are stuggling with your family understanding your condition. My family struggles with understanding me at times too, but at the same time, we all seem to have sensitive stomachs when it comes to food, so I don't have as hard a time with my fam. For example, just tonight my mom couldn't answer the phone because her dinner had "gone right through her". Although I am the only one in my family to acknowledge my IBS, perhaps my whole immediate family has a touch of it. I probably have it the worst because I have a naturally anxious personality. And I really think my dad has it almost as bad as me, but he would never give up the foods and the beer he so likes.
I've explained IBS to my parents a few times, but they never seem terribly interested. However, make them a few recipes from Heather's cookbook and they do start to get a little more interested. I was home for a long time this summer visiting my parents and cooked a lot for them, and they loved it, although I know my dad was glad to have red meat again when I left!
My younger sister who I live with probably understands it best and just laughs at me having to really think about what I eat all the time, but also loves when I cook for her. She also has a touch of IBS, but has such a laid-back personality that it doesn't affect her as much.
But even if you don't have family members who can relate to it like I do, just keep being strong in what you have to do for yourself. I can definitely say that the more I was adamant about my condition, the more my family learned to accept it, because they definitely thought I was a bit pscyho at first. I even had a dream that my dad told me it was all in my head and I just started yelling at him and crying and ran out of the room. That's what I was feeling subconsciously, but it has gotten much better.
One thing I do before going to big family get-togethers is just eat a lot of soluble fiber before, and then just take bites of the stuff there. There's often so many people there that no one really seems to notice that you're hardly eating anything. Just eat really slow....:)
So, what I am trying to say is, give it time and be strong in telling your family why you need to do this. You don't necessarily need to tell everyone..only my immediate family knows, and I feel no need to tell extended family. I guess it depends on how close you are to them.
Ok, this is long. Good luck and give it time!
Peace,
Kathy
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Its hard and unfortunatly you can only educate family and friends but can't change them. Try to focus on what you need to do to be healthy and self talk and remind yourself that. I often remind myself that people don't understand but to take it out on myself its not ok and to use the support you do have to "vent" to. Hang in there.
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It really sucks when those we love just don't get it and in some cases don't want to. But hopefully as you improve on this diet, and you will if you follow it closely, you will be able to rejoin them in activities. But for me the bottom line was that they were not in my body and could never understand so I do what I have to do for me with or without their approval or understanding. So they think I'm weird, that is not as big a deal to me now as knowing I'll feel better today. Sometimes I'll have a flare up and skip some event but now I don't feel so guilty about it. It's my life and I have to live it daily. Good luck friend and hang in with us.
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Franny
IBS/D
Celiac
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Yes it happens to me all the time. My family seems to argue and fuss at every gathering and just yesterday my nephew had a birthday party and I did not go. I knew that the kids yelling and all the sniping with my Mother, niece, and other would have upset me and it is not worth it.
Luckily, my husband understands and even though we go to outings to do with his job they are pretty understanding when I either do not eat or just pick at something.
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gracie
#286441 - 10/14/06 09:27 AM
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Jordy
Reged: 08/12/06
Posts: 2095
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did you start the Acacia yet? If so, how's it going? Are you still taking your flax meal....or did you stop or reduce the flax now that you are on acacia? Thanks
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IBS-C with pain and bloat
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Hi Jordy,
I've been taking the acacia for 1 week, and it's been going good. I stopped taking the flax for now so I can see the full effect of the acacia. I'm also going to try to increase my IF too with more fruits and veggies. Yesterday I had a chicken souvlaki salad wrap, and I had no problems.
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Well, never heard of that wrap...but it sounds awful good! 
How much Acacia did you decide to start with? I hope it continues to go well for you. That was brave to stop the flax and try something new. I tend to get stuck in doing the same thing everyday.
are you peeling your fruits and veggies and avoiding whole grains like brown rice or millet?
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IBS-C with pain and bloat
Edited by Jordy (10/14/06 09:37 AM)
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It's very yummy!
I started taking 1/4 teaspoon of the acacia 2x a day, and yesterday I increased it to 3x a day. Today I'm going to try to get up to 1 tsp. by taking 1/2 tsp 2x a day.
Before I started taking the acacia I also wondered if I should stop the flax. I'm an A so sometimes I'm C and other times I'm D. I may need to take it, but for now I'm just trying the acacia on its own.
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