No support from family and friends makes day to day difficult

[crohnie2]

I just want to see how people deal w the fact that people do not understand crohns. My family and friends don't understand the severity of the disease. They don't understand that I have to cancel plans a lot because I'm not feeling well. I actually have friends that get mad at me after I explain I can't get together because I'm sick. All that I hear is "well you look fine". My family blames the disease on me and say my disease is self inflicted by what I eat (I do not eat what I know will make me sick). Also my coworkers do not understand when I'm unable to make it to work and again say that I "look fine". It's like people think we make this disease up!!?? I have even gotten in trouble at work for "looking tired". When i told my boss i cant help it and its because of my disease, my boss just stared at me blankely!! I have tried to explain to family and friends the severity of my disease and symptoms but I just end up getting frustrated because they don't understand. I continue to be sick w D 7-10 times a day, sometimes more and the lack of understanding is just terrible. I don't mean to go on and on complaining, but I just want to see how people cope w this disease?? Just finding it very difficult and I guess this helps define who my true friends are!!

 

[Manzyb]

hey there,

I do run into a lot of people who don't understand the disease. It will probably always be like that, because it still is for me. Luckily my family is awesome with me about it. My mom always went to dr. appointments with me though until i was about 22 so she was really informed about what was going on.

I always get incensitive comments about how I look fine, and I should just suck it up. It's really hard to deal with other people.

My way of coping is to kind of make fun of or laugh at myself, especially around friends and family. I think it takes some of the possible awkwardness off of them if they see that you can talk about it or even joke about it. That's just me though!

Going through something like this does define who your real friends are. I learned that a long time ago. You'll always come across someone who "doesn't get it", but that's okay, let them, just focus on yourself!

 

[myriahdawn]

I hear you! I don't think anyone took it seriously until I had to have my first surgery. Now everyone wants to do anything for me. Shame it took surgery for them to take my condition seriously.
Even my mom was always saying "oh, I know exactly how you feel". She would compare her minor issues (note: my mom is overweight and eats a terrible diet) to mine and brush them off. Of all people I just needed my mom to GET IT.

 

[superzeeman]

You know what we need? A card that we can hand to them from a crohns organization that describes in a non clinical way, just what we would like to say to be able to explain to them. I have a card that demands use of a toilet becasue of my crohns, why cant I have a card to explain to people that just dont get it?

 

[myriahdawn]

You know what we need? A card that we can hand to them from a crohns organization that describes in a non clinical way, just what we would like to say to be able to explain to them. I have a card that demands use of a toilet becasue of my crohns, why cant I have a card to explain to people that just dont get it?

Ummmm, was that a joke or do you really have a front of the line bathroom card?!?!? I want!!!!!!

 

[superzeeman]

No its real! Go to www.myibd.org and they will snd you the card for free. It says "MEDICAL ALERT" "Restroom Access Required". A lot of states actually have laws that says if you are in a buisiness and have IBD, it is illegal for them to refuse their toilet to you. I have not had to use it but thought it would be nice to have. I does have a short description of the issue too. Maybe that is what I will give the next person that has no understanding of what I go through.

 

[Ihurt]

Sorry you are having a rough time. I totally understand what you are saying. I have been chronically sick for 9 years now with a bunch of crap. I will say that I have noticed that society, or should I say the healthy society out there just does not accept nor understand chronic illness it seems. My own brother use to tell me that if I would just ignore all my health problems, they would go away!!! Really???? I wish it were that easy! I mean people are just down right ignorant it seems sometimes. I use to get myself so upset when a family member or friend would say something rude or insensitve to me. But I just found that it upset me in the end and I would end up feeling worse. Well finally I got fed up and figured it is not worth me getting upset because of some other person who is completely ignorant to my situation. I also realized that you cannot make a person understand. They will only understand if they choose to. I just blocked the people out of my life that were rude or would not or could not understand what I was going through. I mean I lost a few friends( well they were obviously never really friends, so no loss there), since getting sick. I am better off without someone who is going to get mad at me because I do not feel up to going out or doing something. Dont let them get you upset, it is not worth your health! Hang in there, it will get easier.

 

[crohnie2]

Thanks everyone for your comments. You are the best! I will have to look into that bathroom card. I totally agree that society has no acceptance of crohnic illness.