I'm Nervous To Go To A Support Group Meeting

[Guest cassidy]

I have been gluten-free for 5 1/2 months. I doing really well and I love this website. We have a local support group that meets every other month.

The first time I was going to attend, I thought it was on Sunday, but it was on Saturday. The next time I thought it was the weekend before the real date. Then, on the real date I decided to go car shopping. I am very organized and I never mix up dates so this wasn't mere confusion.

So, I decided to admit that I'm scared to go. I'm afraid that people who can eat in restaurants without getting sick with think that I am being overly cautious by not eating out (I am very leary about where I will eat out because I have usually gotten sick).

I also feel like if I'm going to a support group, then there is something wrong with me. I'm sure alcoholics have a hard time going and standing up and saying "I"m an alcoholic and I need help." I realize that it wouldn't be that type of situation, but I feel like going makes all this more real and it is really hard for me.

Can anyone sympathize?

[angel-jd1]

I understand totally. I went to a couple local meetings before I moved. It was good to get to see other people with celiac. However, I was amazed at some of the ingnorance of some of the people. They would eat the dumbest things, and do the stupidest things. They did not keep up with research and safe products. I was amazed.

At each meeting there were always homemade snacks. I couldn't bring myself to eat the things that they made because I knew that some of them weren't careful with their diets. I worried about CC in their homes and the ingredients they put into their things. Call me paranoid but

I decided that I get more out of the online groups than I did at the in person group meetings. I started my own online support group and I (of course) use this board. I get tons of information here and I feel that it works out best for me.

I know some people LOVE their in person groups, but it just wasn't for me. I hope you enjoy your experience more than I enjoyed mine Good luck.

-Jessica

[burdee]

What happens at local support group depends on who leads the group and who attends that group. Our local group previously met at a totally gluten free restaurant. However the leader did not have time to plan an 'agenda' or discussion topic or even guest speaker for every meeting. Our restaurant situation allowed lots of 'side conversations' during the meeting and distracting noises from dishes and restaurant chaos. I stopped attending the meetings after getting contaminated a few times at what was supposed to be a 'safe restaurant'. I also have casein and soy intolerance but was told by the owner that she prepared me casein/soy free meals. My body said otherwise. Eventually the leader resigned and the group attendance dwindled from 20 to 3.

I decided I missed the group enough to volunteer to lead. So I committed to lead at a DIFFERENT location. Our first location was too noisy. So I found a better, quieter location. I also emailed an 'agenda' for every meeting and provided copies at the meeting so members would stay 'on topic' and not go off on boring conversational tangents or engage in side conversations. I also provided free samples from a different gluten free company every month. However I offered those to 'take home' AFTER the meeting. We pass around too many papers, magazines and books to risk sticky fingers stains from eating during meetings. Also nobody feels pressured to take foods they consider unsafe. I also provide ingredient lists so that people with other intolerances have that information to guide their choices.

Tonight for the first time in 9 months we are meeting at a local gluten/casein free restaurant to celebrate a successful celiac awareness walk and gluten free food fair last month (which I organized). Members are free to attend with family members or not attend at all. Learning to eat in celiac friendly restaurants is a necessary evil, but I realize not everyone feels ready immediately after diagnosis.

My point is I took what I did NOT like about the support group I attended and created the kind of meeting which I wanted and I believed would benefit the most members. If you don't like the way one local support group runs their meetings, look for another group or even start your own. Just like churches, celiac support groups depend on their leaders and their members to determine what they offer. Although I have never read a better informational or supportive message board than this one, I prefer BOTH face to face AND online support.

BURDEE

[lorka150]

cassidy, i understand what you mean. some celiacs make me feel like i 'overdo it'. but i just don't like leaving room for error! i found the information at my meeting great, but i'd say that 95% of the folks there were three times my age - i was hoping to meet people at least within ten years! when i went to the first one, i sort of just sat at the back and listened. you don't need to be social with these people, but you might end up liking it! i dragged my mom with me the first time.

[shai76]

I have been gluten-free for 5 1/2 months. I doing really well and I love this website. We have a local support group that meets every other month.

The first time I was going to attend, I thought it was on Sunday, but it was on Saturday. The next time I thought it was the weekend before the real date. Then, on the real date I decided to go car shopping. I am very organized and I never mix up dates so this wasn't mere confusion.

So, I decided to admit that I'm scared to go. I'm afraid that people who can eat in restaurants without getting sick with think that I am being overly cautious by not eating out (I am very leary about where I will eat out because I have usually gotten sick).

I also feel like if I'm going to a support group, then there is something wrong with me. I'm sure alcoholics have a hard time going and standing up and saying "I"m an alcoholic and I need help." I realize that it wouldn't be that type of situation, but I feel like going makes all this more real and it is really hard for me.

Can anyone sympathize?

Don't worry about people thinking you are weird for keeping yourself safe. I don't eat in restaurants either. I learned the hard way a few times that you can not trust strangers to know enough about this disease to keep us safe.

There is also a support group in my area, but I'm kind of iffy about going too. I don't do well in big crowds.

[jenvan]

That's natural--but look forward to it! They may have some good local tips you might have missed. Or it may just be good to sit face to face with some folks who can empathize with what you experience. Or even better--maybe you can offer some help to a new Celiac there...

[olalisa]

I also feel like if I'm going to a support group, then there is something wrong with me. I'm sure alcoholics have a hard time going and standing up and saying "I"m an alcoholic and I need help." I realize that it wouldn't be that type of situation, but I feel like going makes all this more real and it is really hard for me.

Can anyone sympathize?

Just stand in front of your mirror and practice saying, "Hi. My name is Cassidy and I'm a celiac. I have no power over gluten."

Seriously, though, I understand how you feel. I was afraid to go to a meeting, but when I went (I actually had to travel about 2 hrs to get to one) I was very glad that I did. What I found was a great group of people who were NORMAL (except for the gluten intolerance, of course!) and who really "get it" and can offer great support and information. I encourage you to go, and keep us posted!

[taz sharratt]

I have been gluten-free for 5 1/2 months. I doing really well and I love this website. We have a local support group that meets every other month.

The first time I was going to attend, I thought it was on Sunday, but it was on Saturday. The next time I thought it was the weekend before the real date. Then, on the real date I decided to go car shopping. I am very organized and I never mix up dates so this wasn't mere confusion.

So, I decided to admit that I'm scared to go. I'm afraid that people who can eat in restaurants without getting sick with think that I am being overly cautious by not eating out (I am very leary about where I will eat out because I have usually gotten sick).

I also feel like if I'm going to a support group, then there is something wrong with me. I'm sure alcoholics have a hard time going and standing up and saying "I"m an alcoholic and I need help." I realize that it wouldn't be that type of situation, but I feel like going makes all this more real and it is really hard for me.

Can anyone sympathize?

i have reservations too, i feel that what if theres some kinda wierdo out there or they may think that im the wierdo, iys easy to type in on the net but face to faceis a lot harder, im thinking of giveing it a go

[burdee]

To all who feel apprehensive about support group meetings: CALL OR EMAIL THE GROUP LEADER. Tell her/him your reservations. Ask questions. If that leader is sensitive, empathetic and understanding, he/she will reassure you and help you feel comfortable about attending. You will also know at least ONE person when you attend. If conversations or email exchange with the leader make you feel even more apprehensive, at least you will know more about the group. Then you can either look for another group or express THOSE fears to the leader and request email address or phone number of another group member. I can relate to your fears of going to a meeting where you don't know anybody or how anybody will react to you. So correspond or talk to at least one other person in that group before you attend.

BURDEE

[par18]

I have been gluten-free for 5 1/2 months. I doing really well and I love this website. We have a local support group that meets every other month.

The first time I was going to attend, I thought it was on Sunday, but it was on Saturday. The next time I thought it was the weekend before the real date. Then, on the real date I decided to go car shopping. I am very organized and I never mix up dates so this wasn't mere confusion.

So, I decided to admit that I'm scared to go. I'm afraid that people who can eat in restaurants without getting sick with think that I am being overly cautious by not eating out (I am very leary about where I will eat out because I have usually gotten sick).

I also feel like if I'm going to a support group, then there is something wrong with me. I'm sure alcoholics have a hard time going and standing up and saying "I"m an alcoholic and I need help." I realize that it wouldn't be that type of situation, but I feel like going makes all this more real and it is really hard for me.

Can anyone sympathize?

Hi Cassidy,

Last year right after I was Dx'd in May one of the first things that I did was to contact a few members of the local support group in my hometown. The group meets once a month. Before going to the first meeting in June 05 I spoke to several of these members on the phone just to have someone to talk to. These conversations relaxed me so that when I went to the first meeting I at least knew someone's name I could look for. As it turned out one of the first people I saw at my first meeting was a former co-worker of mine in the computer industry who had retired. He has been gluten-free since 1972. While at the first meeting I was able to find sometime like myself who was recently diagnosed. I must admit in the beginning it was a little tough looking at all those people who were "old pros" on the diet. However no one made me feel uncomfortable so it went well. Now being "experienced" with the gluten-free diet I seek out new faces and try to reassure them that if they stick to the diet they too can feel well. I think that helping someone else is one of the most important and satisfying things we can do. Good luck and hope all goes well.

Tom

[Guest cassidy]

Thanks for the insight. I think I will give it a try. If I don't like it I can always leave. And, maybe there will be someone else there that is new.

[TinkerbellSwt]

I found a group near myself too in central NJ. I am apprehensive b/c I dont like going into a group of people I dont know. I actually did contact the "contact person" for the local group and she was a little odd. She was an older woman, who was almost nasty to the point of me hanging up, she wanted to know what my purpose was in calling her when I called. I told her that I heard of the group and heard she was the contact. She said yeah she has done that a few times.

She talked to me a bit, but didnt relax me at all. She didnt offer any help and she couldnt even remember where the meeting was in the hospital that it was at. She knew it was in Brick Hospital, but couldnt remember what floor or how to get there.

That deterred me from going. I dont know if I will try to go again sometime. I am a big chicken about social situations when I dont know anyone. I really have no one to drag with me either. I dont know what to do about it. maybe someday.......

[Soo B]

-- I'm afraid that people who can eat in restaurants without getting sick with think that I am being overly cautious by not eating out (I am very leary about where I will eat out because I have usually gotten sick). --

I understand the concern -- my sister gives me a hard time about being 'too worried' about everything, but then again, she still sometimes buys and eats things without even looking at the label. She 'guesses' they'll be OK.

The thing is, we all have our level of comfort when it comes to what we put in our mouths, and the bottom line is that ONLY YOU get to set that level. You have full veto power. Most people will hopefully respect your decision. Try and ignore those who don't. Maybe you'll find someone there who feels exactly the way you do!