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11-15-2006, 08:18 PM   #1
tonya_n_ky
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How do you Deal?

Ok, My turn to VENT. I am feeling better as far as the Crohn's goes but I have something eating at me and not so sure how to deal with it. I have found that I am VERY offended by the way some people take me having Crohns. I hear "Are you lazy?" "Why don't you work?" Things like that and the part that bothers me is... it's family! The people that are supposed to be there for you no matter what. I have to deal with these people so my question is how do I handle them questioning me to death or making thier ignorant comments and not be rude or just plain out go the hell off when it's brought up? I am a mother of 3 and my fiance has 2. So I stay pretty busy being at home. I'd love to get a job and be just like everyone else and plan on looking for something soon. But in the meantime, I get to hear about the things I'm not doing and how wrong I am or how I use the disease to get a pity party or something. (Which I have NEVER done) I have worked from the time I was 15 until I got sick and have tried several times to work, just to have to call off enough to lose the job. My fiance is wonderful and fully understands so for that I am sooo grateful. But his family and mine both seem to want to stick thier nose in and make me feel like crap about something I am trying to get control of. It's very depressing and hurtful and they don't seem to understand that they are wrong. It should make for interesting holidays, lol. HELP!!
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11-15-2006, 08:31 PM   #2
Jeff D.
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I get that from my parents as well. They think I am lazy if I do not feel like doing something. If I don't do it its just because I feel that if I am going to move I will explode.

But back to you, don't worry about being a stay at home mom. So many people do that. If you can, could you possibly get a job that you can work on it at home. What I have to do when I start getting lip from my parents or my friends then I just kind of walk off. I have to just calm myself down by meditation.

Best of luck
11-15-2006, 09:03 PM   #3
tonya_n_ky
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I would love to get a job from home but not sure which ones are legible. I don't trust a lot of them. But would love to if possible.
Yea, I know all about walking away and calming down but I have a problem where I hold a little bit of a grudge sometimes so next time I'm hoping I don't blow up. I have a few times with my Mom already. Being 34 yrs old and still having to explain myself kinda gets old. I'd sometimes love to give them a day with Crohn's and see how they handle it.
Thanks for the post Jeff.
11-15-2006, 09:49 PM   #4
Jeff D.
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Ha that would be funny if everyone in the world for one day could live with Crohn's, just one day, then they would all know what we go through.

Sometimes I hold a grudge as well. I find that just meditating afterwards and trying to see how they feel works very well. They do not understand what we go through everyday. It's something that is just impossible for someone without Crohn's or any IBD to understand. Maybe go to www.trueguts.com and buy his movie. He created it about Crohn's patients so everyone can understand what we go through. Maybe that could help them understand a little better. Have you ever told them what happens when you get a flare? Also what happens when you get stressed because the situation seems to be stressing you out, let me know if I am putting words into your mouth, but if you are like me and you feel worse when stressed then let them know. They have to understand what you are going through otherwise they will never get it.

Good luck
11-16-2006, 05:04 AM   #5
DannyB
 
I think that its absolutely shocking that people anybody should be so rude especially family members, if I had family who were to question me with my crohns then I would have to lose the plot and do them over I think but anyway I am a Scottish hothead and thats how we solve problems here.

So I think it probably best that all of these negative are brought into your house and you sit them down and explain to them your situation because as WE know, having IBD is practically a hidden illness until the toilet part ofcourse but in relation to a physical illness and sometimes people have to be educated so its a good idea in my eyes that you do that.

All the best with the situation which your in.
11-16-2006, 03:55 PM   #6
tonya_n_ky
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I've tried to explain to each what happens with the flares and how I feel on a daily basis. I almost feel like they think I'm a hypocondriac sometimes. I was telling one family member things that I have learned on the forum and my response from them was "Oh, you're playing doctor"!! It's almost like they take it all as a joke and make the hurtful comments without even thinking of the pain that it causes. It's gotten to where some aren't even welcome in my home anymore. And that's not what I want out of the situation but at the same time I can't deal with the stress it causes for everyone, including myself. I don't know much more I can do to make these people understand what I go through. I think a lot of it is that it's an "inside" disease and I don't look sick so therefore I must not be sick. To look at me, I look healthy for the most part. But on the inside it's a whole other story. And it's hard for people to see or understand. Kids are involved and it's family which makes it even harder. You can't just walk away and keep the negative people out of your life completely because you're hurting innocent people in the process. Where if it were someone off the street, I wouldn't care what they thought. I am a very emotional person to begin with and I am soft hearted so it crushes me when people I care about doesn't get it. Oh and I'll also add that each has thier own health problems and it doesn't help them at all to understand mine. Thanks for the posts you guys, I appreciate it.
11-16-2006, 04:35 PM   #7
Jeff D.
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Good luck, I don't really know what to do except for getting the movie true guts to show them how we feel. That way they will know it is not just you who is like this and maybe that causes it. I think a lot of us have this problem and I think one thing that causes it is that they are in denial that you are sick. THey just don't want to believe it so they just try to go on like nothing happened.

Good luck
11-16-2006, 04:44 PM   #8
tonya_n_ky
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Possibly true. I'll look into the movie as well. I guess what don't kill us will make us stronger. Thanks Jeff
11-16-2006, 08:27 PM   #9
mikeyarmo
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If people were only as smart as us...

Anyways I know what this is like, and it is really hard to control. First you get mad as you can't believe that you were just told this. Then you can't answer as you feel like you might start yelling if you open your mouth. Then you tell yourself to calm down as stress is bad for the disease.

I think there are a number of ways to deal with this thing. Having the support of family (fiance) is definately something you should realize you are lucky to have. Someone who understands is better than a lot of people have, so take advantage of this when it is needed. Just let it out when you need to... let him know why it upsets you and what you would like to tell the others who say the ignorant things. Just telling him what you would like to have said may help you get the anger out.

I think we need to realize that most of our family have really no idea what we go through. It is not there fault, but they have other things to worry about. I am not trying to marginalize our disease or your condition or their worries, but we all have the trait of focusing on our own issues. Family usually does not think out exactly what they are saying or understand what effect it is having on you. I suggest doing one of a few things. You can always turn the "attack" back on them, by doing a bit of an attack also. You can say something along the lines of "Oh! I did not realize that you have been dealing with Crohn's all this time also and know what I am going through!... (continue to make the point using sarcasm)" This way is not perhaps the best way to handle the situation, but it may be a wake-up call for people who keep bothering you about it.

What I see as a more productive way of dealing with this situation is telling the family member in question EXACTLY what you feel. Tell them why what they are saying hurts you or is wrong, and why the thing you miss most is being able to have a normal job, etc. Tell them the exact reasons why this disease makes it hard for you to do whatever they are telling you to do, so that they understand that this is a real medical condition and you are going through real symptoms. "I am tired" does not sound as convincing as "I am tired due to the anemia that I have developed due to intestinal bleeding". The more detail the better. Even if your family says something like "Thats not what I meant" or "I did not ask that... that is too much information" let them know that the continued questioning is only answerable this way so that if they don't want to know the answer, stop asking the question.

If this continues to go on I recommend reminding them of the previous conversation where you explained to them your thoughts ("remember two weeks ago I told you...") or even let them know that you already previously told them the answer to your question, and if they want further information they can contact your Gastroenterologist (even if you just see a doctor I think it sounds better to say GI). Chances are your family would be too embarrased to do this and you are then in the clear.

Lastly, you can also try and limit the questioning by asking for favours after each question . This may sound funny, but next time you are asked "Why don't you get a job" consider telling them how your disease affects you and end by saying "But I could really use some time to recover. Would you be willing to do X (watch the kids, pick up groceries, etc.) for me next week? Chances are the questions will soon stop if you constantly ask for favours after each one .

Good luck with this and just remember that no one realizes what they are saying, and they are not trying to hurt or upset you. While we can't control what others think, say or do, we can control our own emotions.
11-16-2006, 10:13 PM   #10
Jeff D.
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I like those ideas Mike. Especially the sarcasm, I love sarcasm ghghghghghghggghhhhhhhh hm sarcasm
11-16-2006, 10:49 PM   #11
tonya_n_ky
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Thank ya Mike, some really good suggestions and thoughts. I'm with Jeff on the sarcasm. LOL I'll keep this post in mind the next time I get a lecture. Thanks again
11-16-2006, 11:00 PM   #12
Cara Fusinato
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Mike's answer is great! I tended to remind my family of the times they have had food poisoning or giardia and then telling them I have it every day. My mom has some of the same symptoms, so that helps. I also would flat out tell them (like Mike said) how it makes you feel, that they should say such things, and then I would explain just how sick and tired you are of being sick like this and how it sucks to be a ticking time bomb never knowing when surgery would come along or how bad it will be. A few times of crying over that concept got the point to people and they left me alone. Hang in there and keep working hard taking care of the kids. I know, write Dr. Phil and have him help you explain it to the family! And he'll give you things, too!
11-16-2006, 11:19 PM   #13
tonya_n_ky
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LOL @ Dr Phil. I love that guy. Maybe we can all go on and he can have the "Crohn's" topic one day, then we can just explain it to the world all at once. Mike...call the doctor and get us booked
11-16-2006, 11:24 PM   #14
Cara Fusinato
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Great idea! Mike, call Dr. Phil. He'll donate $$$$ to keep the board running or something! I'm just about 4 hours from LA where he does taping, so I'll be happy to go on . . . I can talk about . . . MILK! Maybe Dr. Phil can arrange for a milk industry rep. to be there and explain to us all why they can't change the pasteurization process just a little bit to kill the MAP! Oh, what fun! I wanna be on Dr. Phil. Maybe I can get Robin's new book under my chair! Or maybe we can all get professional help, or a $40K donation to Crohn's research (or better, this board!). Yep, gonna happen, glad I thought of it (seconded by Tonya!).
11-16-2006, 11:37 PM   #15
tonya_n_ky
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says "I" and raises hand...lol
11-17-2006, 04:10 PM   #16
tonya_n_ky
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Dr. Phil show
5482 Wilshire Boulevard #1902
Los Angeles, CA 90036

There ya go, I even found the address for ya.
11-17-2006, 10:03 PM   #17
mikeyarmo
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You both seem to be much more passionate about doing this than I ever would .

I wholeheartedly would encourage you both to actively pursue going on the show. In fact I posted a while ago about Oprah and IBD. Check the link out, which should let you know about the attempt to get Oprah to do a show on Inflammatory Bowel Disease. You can send her (or her team) a message about it here: https://www.oprah.com/plugger/templa...lugId=B2100004

Also consider e-mailing the Dr. Phil show at: http://www.drphil.com/plugger/respond/?plugID=9164

I am sure we can all come together and voice our opinions about IBD, our lives and the awareness of the world to our lives.
11-17-2006, 10:05 PM   #18
Cara Fusinato
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Tonya -- since it's your family that he'd want to make feel bad, why don't you e-mail the show. I'll join you in LA for support! Let's bring awareness of Crohn's through Dr. Phil!
11-18-2006, 06:36 PM   #19
GeoGiGi
 
I sent 'em both notes about doing IBD shows-- the more people they hear from on this topic, the more likely they'll do a show on it.

About your family-- I have the same problem with friends of mine who have trouble understanding the natural of the game. One told me I just needed to find a good naturopathic doctor and I'd be fine. It's hard to get people to realize it's something you deal with forever. I think it's hard to get it through to them because they often see me when I'm doing well, not when I'm suffering or anything. I have a hard time with this-- but it seems the more explicit I am about the disease, the more they get it. In another posting someone suggested talking to them about "the big picture" of how it's an autoimmune disease that goes through phases of flares and remission and how it affects all of us differently. Then give 'em more details to make them understand how it affects you. But ultimately, I think true friends will stick by you even if they don't completely understand. Family is more difficult to deal with since you don't always have much choice about 1) being related and 2) how much time you spend with family members. So, hang in there and remember you can always come wvent here about annoying family episodes! Good luck with the upcoming holidays...
11-18-2006, 08:56 PM   #20
skeet
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Tonya, you're dealing with five children! How is that not a full time job? Sheeeeeesh, the expectations some people have! Without even adding Crohn's to the equation, you're doing one of the most worthy and most time-consuming jobs that has ever existed. Fie on them, I say! Fie on them! (Not sure if I've ever really understood precisely what that means, but it sounds good, doesn't it? In my head it loosly interprets as "May a thousand plagues descend upon your house and devour every morsal of your cold-hearted, blood-sucking, dastardly being!)

You've had some great suggestions above. Maybe I can adapt some of them to my situation. I gotta tell you, I've mouthed forgiveness, and truly tried to "put that all behind me" when these things occur, but there's a hard little corner in my heart that should be filled with love for people who have hurt me deeply with their lack of understanding & maybe a little compassion. I'm old and set in my ways. Maybe I'll die a hard-hearted old b---h, but there's still time for you!

My wish for today (my wishes always come true, ya know ) : May you find true healing in your relationships with family. If, just this once, the skeet-wish fails, there's always this --------->

{{{{{Tonya}}}}}
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Last edited by skeet; 11-18-2006 at 09:00 PM.
11-20-2006, 09:22 PM   #21
tonya_n_ky
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lol, thanks for the posts. Trust me when I say that I will take a little advice from each of you and put it to use when I need to. I guess we all go through it to some extent. I really do appreciate each and every one of you for taking the time to help. ((((Hugs))))
12-01-2006, 11:32 PM   #22
TammySue62
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mikeyarmo said:
You both seem to be much more passionate about doing this than I ever would .

I wholeheartedly would encourage you both to actively pursue going on the show. In fact I posted a while ago about Oprah and IBD. Check the link out, which should let you know about the attempt to get Oprah to do a show on Inflammatory Bowel Disease. You can send her (or her team) a message about it here: https://www.oprah.com/plugger/templa...lugId=B2100004

Also consider e-mailing the Dr. Phil show at: http://www.drphil.com/plugger/respond/?plugID=9164

I am sure we can all come together and voice our opinions about IBD, our lives and the awareness of the world to our lives.
Well my Daughter e-mailed the (SO) Sharon Osbourne Show when she had the show at the time.But its cancelled now boo hoo I loved watching that show. She was just great down to earth person told the truth and didnt hold anything back, well she didnt answer the e-mail closes subject she talked about was cancer,cause she had some form of cancer. anyway I MISS THAT SHOW, Sorry kinda got off the subject i was on. Tammy Smith
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