Celiac Equals A Lonely Life

[alesusy]

I think

 

I am blessed with several friends who took the time to learn what I can eat and cook it special. Also, I'm not the only one. I have invited people over for dinner quite successfully too. Frankly things are much easier when you start feeling better, which in my case happened about 7 months after gluten-free, and I can tell you, I'm not HEALED yet, but things have improved immensely. What it boils down to is:

- not center your social life on food. Going to gatherings and bringing your own food or eating before

- when people are cooking for you either discuss the menu before or go prepared to skip the meal or to eat only half of the menu

- in restaurants, strict choice of roast meat and potatoes or fish and potatoes, OR gluten free pasta. It is much easier here in Italy, because most restaurants do know what they are dealing with: however it DOES entail always talking to the maitre. It's becoming second nature...

- shopping for gluten free products and automatically eliminating suspicious foods. It does become second nature, this too.

 

I'm going next week on holidays in Sardinia at a friend's house. I'm going to bring along some of my stuff. I'm conscious of the fact that it means everybody will keep worrying about how to feed me, but the only way I found to deal with the situation is shopping myself for my stuff and either proposing to cook for everybody or at the very least cook my own stuff making sure I'm using clean pans clean spoons etc. If you do it naturally enough, people will follow suit.

 

I HAVE been told by several people that I talked only about my bowels and/or that I talked only about my own problems. People just do not realize what it means feeling sick. You are not in the hospital and look more or less norale, so they really have a hard time believing how sick you feel. Luckily, when you start feeling better you also start getting more of an interest in life and can curb your impulse to expound about your own health

 

Having said all this, friends who will not take the time and effort to understand are not much as friends. I think we can all use the occasion to clean our mailing lists and Facebook friends' list. Family we cannot clean up, but on the other hand yelling at family is OK.

[dani nero]

    you are entitled to your opinion, of course, dani... but I have to say that I simply cannot agree with any of those statements.

 

I think that whatever way WE view having celiac is the way the others in our lives will,  too. 

 

I certainly do not think life is rotten. I worked hard to get my life back to normal after being very ill and I do not really allow anyone to make me feel inferior or bad because I have celiac.

 

I do not talk about it that much with people (outside of other celiacs) because it is not the focal point of my life.

I choose times to promote celiac awareness, too because I think we are the only ones who can really make a difference in how it is perceived. 

 

Attitude plays a big part in adaptation and acceptance. IMHO

 

I am glad to hear that life has not been rotten to you :-) Mine on the other hand has been beyond rotten. Never works, whether I have a positive or negative attitude. All I ever get is people making faces and throwing opinions regarding my unreal diet, so I learned to simply live without caring about what they think or do. 

It must be nice to be surrounded by understanding, tolerant and nice people, but not everyone gets the luxury IH. If people knew about Celiac without us having to educate every last human we encounter, we wouldn't need to be explaining ourselves as often.

[dilettantesteph]

I am glad to hear that life has not been rotten to you :-) Mine on the other hand has been beyond rotten. Never works, whether I have a positive or negative attitude. All I ever get is people making faces and throwing opinions regarding my unreal diet, so I learned to simply live without caring about what they think or do. 

It must be nice to be surrounded by understanding, tolerant and nice people, but not everyone gets the luxury IH. If people knew about Celiac without us having to educate every last human we encounter, we wouldn't need to be explaining ourselves as often.

 

I read about your recent glutening in another thread.  I get to feeling these same feelings that you are expressing when I am glutened.  Life will seem much more hopeful when you get over it (the glutening).  Hang in there.

[dani nero]

Perhaps it is a bad idea to judge how life has been in general when close to a glutenation, but I really doubt it's all in my head. For example, here I am today, visiting family away from home, yet I'm here left alone at their home by myself because I'm not feeling well, and everyone thinks I'm not feeling well because I don't distract or activate myself. So instead of keeping me company, they're out swimming.

 

It isn't my intention to be diverting the conversation away from the op, but I just think that basing our happiness on how others behave towards us, and specially when we're feeling lonely is a crappy side of life due to people not knowing enough about celiac! They actually think that our lives would not be as hard if we ate gluten because then we'd at least not be deprived of "food".

BZBee please let us know how it goes with your family and friends. 

[BZBee]

My immediate family is trying, and asking me more questions on what I can eat and how to prepare when I come over. My outside family, not so much but I chose to distance myself from them on food occasions. I'm definitely learning who my friends are! Not that I need to have social occasions around food and have absolutely no problem preparing my own, but I've been excluded from non-food functions as well. I have (real friends) that are cool with the idea. I am getting tired of explaining the disease and diet, but I remind myself that I didn't know much about celiac disease before diagnosis. Most, I think just want educated on the topic.

I refuse to let the disease define me. I still go out and do my activities when I can and I'm rebuilding my body. When I work out I have to keep "before sickness" body out of my head and focus on what I've got at the present. There's good days and bad days but I do seem to have more good days than bad. So I guess I'm headed in the right direction.

[Celiac Mindwarp]

More good days than bad is VERY good news.

I now notice if I have a bad day, because it happens infrequently. 10.5 months gluten-free.

Keep it up, we are here cheering you on

[dani nero]

My immediate family is trying, and asking me more questions on what I can eat and how to prepare when I come over. My outside family, not so much but I chose to distance myself from them on food occasions. I'm definitely learning who my friends are! Not that I need to have social occasions around food and have absolutely no problem preparing my own, but I've been excluded from non-food functions as well. I have (real friends) that are cool with the idea. I am getting tired of explaining the disease and diet, but I remind myself that I didn't know much about celiac disease before diagnosis. Most, I think just want educated on the topic.

I refuse to let the disease define me. I still go out and do my activities when I can and I'm rebuilding my body. When I work out I have to keep "before sickness" body out of my head and focus on what I've got at the present. There's good days and bad days but I do seem to have more good days than bad. So I guess I'm headed in the right direction.

 

I admire your determination and hope that your good days will always outnumber the bad ones :-)

[IrishHeart]

I refuse to let the disease define me. I still go out and do my activities when I can and I'm rebuilding my body. When I work out I have to keep "before sickness" body out of my head and focus on what I've got at the present. There's good days and bad days but I do seem to have more good days than bad. So I guess I'm headed in the right direction.

 

Sorry I took so long to reply to this extra-special response you wrote!!!

 I was visiting family and friends after being unable to do so for nearly 5 years and it was just plain AWESOME!! I had a wonderful time, I drove myself ---over 400 round trip miles--- and I ate out in carefully selected places and I brought food with me, too. I had lunch with another c.com member, Gemini and I am in charge of my life and I worked hard to get here. It was not easy, but I focused on recovery and healing and yes, I kept a positive attitude, even when I was in excruciating pain. I kept my eyes on the prize..

 

You have a most excellent attitude, Bee and I promise you, even if everyone does not "come around". life is still good and believe me, your attitude will most certainly help others in how they respond --in kind--to you.  There will be more and more good days. Celiac and the gluten free diet  is not a death sentence---it is a chance to heal and have a healthy life.

 

You are, indeed, headed in the right direction, hon. Hang in there! 

[IrishHeart]

I am glad to hear that life has not been rotten to you :-) Mine on the other hand has been beyond rotten. Never works, whether I have a positive or negative attitude. All I ever get is people making faces and throwing opinions regarding my unreal diet, so I learned to simply live without caring about what they think or do. 

It must be nice to be surrounded by understanding, tolerant and nice people, but not everyone gets the luxury IH. If people knew about Celiac without us having to educate every last human we encounter, we wouldn't need to be explaining ourselves as often.

 

I have my share of people who are negative, too Dani, but I do not really care what  they say. Maybe that's the difference.

 

I know what I need to do to get well and I have set people straight about it. "Take me or leave me, because this is my life", I say. "This is what I do to be healthy."

 

I am sorry to hear your life is rotten, hon. I had a horrid rotten run when I was dying from this disease, and my recovery was slow and

difficult, but I simply do not let anyone in my life make it rotten for me by being adversarial with me about the  gluten free diet.

 

Maybe  you need to stop bothering to educate them and just start saying, This is what I need to do to be healthy. Sorry if you do not understand and I do not need your approval so keep your criticism to yourself, thanks.

 

Just a suggestion.