How can I be social?

[mbhbarb]

I’ve come to understand that for me living with IC and related medical issues has resulted in a kind of sensory deprivation that creates a chasm between “normal” people and me. I go to a cocktail party, they’re all drinking alcohol or at least soda water with a twist and I’m drinking still water. I go to a coffee house, they’re all having coffee drinks and I’m drinking hot water or herb tea. I go to a party or out for a meal, they’re all stuffing themselves with the delectable culinary delights of the venue, I’m eating salad with no dressing and maybe fish or steamed veggies with no spices. Holiday get-togethers, boutique openings, anything glamorous all seem permeated with food. I love the society of these activities and often bring my own tea bags and munchies so I can go, but that sets me apart. There are questions and looks. I’m sure some people think I’m a pain or a nut, or both, for eating so carefully. They talk about the delicious items on their plates, I smile and join in, but I don’t share.

Funny thing is, I don’t generally feel deprived. Staying out of pain is much more important to me than wine or coffee or any food on earth. But people don’t understand that. They always urge me to “just have one drink” or “take a little taste of.” I know they mean well, but then I have to fend them off politely while still protecting my privacy. That takes away from my enjoyment.

Then there’s the whole sex thing. And the bath thing. And I don’t sleep. Having a body isn’t as much fun as it used to be. As I continue to make adjustments to the new reality in my life I recognize I need new sensory pleasing IC/IBS/GRD/ENDO safe activities and also strategies for participating in old activities without seeming like a weirdo.

If anyone would share some ideas I would be most appreciative.

[theclownster]

Hi there! I'm sorry to hear you are having a hard time with this. I think it's part of all of us ICer's lives. For some of us it's really hard, while for others it doesn't seem to be that bad. I don't know if I have any great suggestions for you. I just wanted you to know that you are not alone.

I'm very open that I have IC. It's a part of me and I've found it easier to be honest an open. I will say I'm very firm with people who have tried to urge me to do something different that what I should be doing. If they push, I think I raise my voice a little (slightly and say "NO, it's not worth it). My husband is wonderful. He sometimes just tells other people that I'm allergic - to keep them from pestering me. It might be a little easier for me because my husband doesn't drink and his reason is very legitimate - he truly is allergic to all forms of alcohol (including drinking, rubbing, alcohol in shampoo etc.) I often tell people I have IC - but sometimes I don't like getting into all the details so instead I sometimes just tell people that I have a medical condition or that I'm on meds that prevent me from participating.

To be honest my method must be working because no one even bothers me about it or says anything anymore. I'm also a social worker who works in the bereavement field - so I work with extremely compassionate and understanding people. I am very fortunate to have supportive co-workers/bosses. I also try to surround myself with people who can accept me for who I am and for those who don't, I try not to let it bother me (which isn't always easy to do).

I'm not sure if this is helpful to you - sorry! I just wanted you to know that I've been there at the beginning of my IC diagnosis and it has gotten better for me. I hope you are able to find something that helps you in these uncomfortable and awful situations. Take good care of yourself.

Warm hugs,
Jennifer

[kadi]

For general enjoyment of life/treats:
Fire in the fireplace, warm blanket, cat & a great book or movie
Candles
Fuzzy socks
Manicures every 2 weeks
Foot soak with mineral bath salts
Have created a container garden oasis on my apartment balcony, decorated with white xmas lights year round
Gentle yoga videotapes
Now that I'm feeling better & can exercise again (!), the shower after the workout is one of the best things ever!
Clutter free bedroom, my sanctuary
Trip to the public library - love books!

Safe food treats:
Starbucks Vanilla Bean Creme Frappucino (no coffee!)
White hot chocolate made at home
Bake most of my own desserts so I have something at home for a treat

Different fun
My close friends know that food & dining out is now a source of stress, not pleasure.
So, we plan different fun. One friend comes over for a breakfast I cook, then we go out to the movies, Starbucks & the bookstore (all in same complex). Another friend keeps a plain steak in the freezer for me, there's always rice in their house (filipino), & we plan an evening at her place with board games with the kids or video. One girlfriend lives close to a wonderful health food coop, so sometimes that's our outing. We go there & read labels & take something back to her house to cook & then watch a video or take a walk or just talk.

Over time, living with IC has become easier. Most of my coworkers now know I have a health issue that is related to diet. New coworkers or acquaintances, I just tell them I have food allergies, say that the most important part of the party is the getting to talk with people, then I change the subject quickly to something we can both enjoy talking about. "When did you move to CA? How long have you been coming to our church? Neutral stuff. I practiced it 10 times with a friend who "tested" me by becoming nosier & nosier til I got good at deflecting the attention.

I do though have one group of coworkers (my department) who are VERY hung up on food & really don't get it even though I've had this for 5 holiday seasons now. Since this year's party will be an expensive meal at a winery (paid for individually) & will be completely food-centered, I will likely just happen to be "out of town" that weekend, which is what I've said for four of the last 5 Decembers. It's nice that they want to invite me, but it's not a nice event for me to attend. I see these people daily, so really it is the restaurant experience they're having, which I can seriously do without!

On the other hand, my church is having an event, also catered, but there will be music & thank you festivities for leadership who really merit the acknowledgement, so I'll take my bag dinner & just deflect the occasional nosiness that comes my way...

Hope this helps a bit, it does get easier with practice.
Hang in there,

[mbhbarb]

Jennifer,

Thank you! I really appreciate your ideas. I feel totally comfortable blaming medications (hadn't thought of that) - most everyone is on something and they're not likely to question further.

barb

[mbhbarb]

Kadi,

Thank you for a wonderful list. I copied into a Word document so I can print it. I look forward to trying these new activities. Love the simplicity of many of them; perfect for me. Do you know if there is a similar list in any of the IC publications? Thanks again.

barb

[kadi]

Hi Barb,
The part about the bedroom being a sanctuary, I got from a book called, "The Chronic Illness Workbook: Strategies & Solutions for Taking Back Your Life" by Patricia A. Fennell.

The other ideas came from counseling with a medical social worker, who encouraged me to make a list of things I liked that were not affected by the IC.

He also worked with me on identifying the "essences" of what I liked to do.

Example: Before IC, I was a traveller & IC, along with the development of extensive food & antibiotic allergies, has really put a damper on that. I looked for what it was that I liked best about travel- language, people, culture. So, now I am studying American Sign Language - I still get to meet new people, learn a new language & experience a new culture (deaf culture is different from "hearing" culture), but it's available at my local community college for very low cost so I don't have to travel or deal with restaurants & manage food.

Another one: I loved to hike, be outdoors in nature. Couldn't really do that for a long time (though I can now again!), so that's why I made the container garden & keep the hummingbird feeder filled:)

Hope that helps!

[ICNDonna]

I have found the best way to deal with this is to smile and say, "No, thank you." then continue talking about other things. I'm having to deal with diabetes along with IC and some allergies these days so I'm saying it a lot! Nobody seems to mind.

Donna

[lisabar36]

Hi, I thought I would add in here, I understand it being hard to be social, everytime I have an event coming up, I think what if I am not feeling well, having spasms, I drink water and everyone else is drinking alcohol, that doesn't bother me, I just simply say I don't drink, now at work, I say I have food allergies, and I can't tolerate anything with acid in it, and to some people I am close with I say I have IC, and most responses are they don't know what it is, or they think its a UTI. Most of my friends go to clubs and drink, and they don't understand I can't do that, and the reason is, by night time, I am just ready for my good nights sleep and I can't handle being out until 2am. After all day doing things, my pelvic area hurts by night, night time is the worst for me and always has been, for as long as I can remember! I also alot of time say No thank you and smile and that works to! Maybe try to do activities when you feel your best, I try to early morning into afternoon. Use my night time for relaxing after a long day on my feet. I also usually feel deprived of foods, I go into star bucks and I know I can't have anything without being in pain, so I kind of feel a little down when that happens. Good luck!

[mbhbarb]

Thank you all for the great ideas; they will get me through the holiday social functions and beyond.

barb

[Claredale]

I have certainly had my time feeling sorry for myself and feeling like it was easier to stay at home, but with my friends and my husband's encouragement, I am doing much better. I am still "allowed" to have my days that I spend in my pajamas (which what girl would love to do from time to time!). My sister in law has chronic migraines and Lupus. We always get each other comfy pjs for Christmas every year. It's a fun tradition!

I have a great group of friends that I have known for years. Actually we all have some sort of physical issue going on with each and every one of us, so we all understand each other and even when one of us is not able to be apart of our "YaYa" night, we always make each other feel welcome each and every time. None of us drink alcohol so that's not an issue. I can drink rootbeer on occasion, so when we have game night, I am not just drinking water.

If we go to a restuarant that I am not familiar with, I even have been known to see if their menu is posted on-line to get familiar so I am not asking a ton of questions when the waiter is taking my order.

I have used the word "allergic", but most of the time we go to my husband and my favorite restaurants and fast food places on a regular basis. I don't cook much, so I have learned very well what I can eat and where! It has become a game at times when we go to the same places. One girl that works at our local Zaxbys (chicken place) will see me and say "I know, plain plain wings" and water.

At the end of the day, I look forward to the next which is such a great feeling to finally have! It may not be perfect, but I am going to make it fun in some way!

T83

[sickofmybladder]

I sometimes struggle with this as well (don't feel alone). The going out and eating out etc. has gotten better since we tend to hang out with the same group on a regular basis - they have simply gotten used to it now - and they do know about my I.C. but they don't understand - they finally quit asking :)

Now - I do still have the same feelings as you in regards to sex etc. But there are alot of tips on another thread on this board - try them out - sometimes it works sometimes not but that is the nature of I.C. unfortunately. But again - "sometimes" it works. :smile tee

[mary124]

I have struggled with this for 15 years or so. Most of my co-workers know what I have (but when you work in pretty much the same buildings (different jobs- for 22 years or so, you know each other pretty well), when we go out to lunch, co-workers always ask what can I have so that I won't feel terrrible in a few hours. I am not as food sensitive as most people but I do have a few triggers. (I know that I can eat Mexican food and Italian but it has to be at a certain restuarants-strange I know but apparently something is put in some of the foods at different places that I can't handle)

Kadi: I like some of your suggestions! but a clean bedroom will never be mine!

[ABliske]

People never did understand the not being able to drink. I'm pregnant now and that really helps. People still don't get it at all though. They're like, "we need to make you a fruity, fizzy drink." I've been there and can totally relate to what you're saying.
And all my in-laws have chocolate at every birthday. I think it's getting to me more and more. I always say, "I can't have chocolate." I could totally see my mother-in-law having a chocolate cake at my baby shower. Good thing my sister's planning it!!!!
One fun thing my friends and I do is make dinners for each other once a week. A girl's night! It's good to do it at home - no worrying about what goes into the food. The only thing I've told them is I can't have tomato. Mostly, I've been able to eat what they serve. We're usually still cooking when we get together. So, I can be like, "Can you hold the dressing on mine (or whatever)?"
Another new hobby is going to craft fairs to sell stuff and look around.

[irishnan3]

Social events .....so many coming up with the holidays. :help:
It is so hard to be good all the time. But I know I'll pay the price if I'm not.

[Berkshire Road]

One of the ways we have worked out, for handling the holiday socializing, is to host events at our house. Now, I am very lucky and have a supportive husband who will cook, and kids who will clean up, and a cleaning service to get the house ready -- so I understand that this can seem overwhelming for some people. If it doesn't work for you, there are a lot of other suggestions posted, but we've had a good time hosting Thanksgiving, Chanukah (first night celebration), and because we skip New Year's Eve, we usually have a New Year's Day brunch for friends. This way I know that there is plenty of food around that I can have.

Every year we have to go to a big Christmas celebration at one or another of my husband's relatives' homes, and that can be tough. I usually make sure I have some food stashed in the car, so if I really can't eat anything there, at least I won't starve.

Very often if you ask, restaurants are able to prepare dishes differently, leaving out troublesome ingredients or just grilling plain fish and rice -- whatever works for you. I've been to a Thai restaurant in Paris and a Cuban restaurant in NYC over the past few months, and both places were very nice about making me something I could eat. The meal at the Thai place was actually fantastic. So, it doesn't hurt to ask.

[CathyKi]

The school board decided that all the teachers would choose one student to honor at a fancy breakfast. So I will be there and I am hoping noone will notice that i am drinking bottled water and not eating.

[Sally939]

What will they serve at the breakfast? Maybe eggs? That would be safe. I completely know how you feel. I am still working the diet out. I recently went to a meeting and when we went to a nice place to eat I had me bottles water in my purse. I then "went to the restroom" and explained to the waitress that I have a medical condition... and had her serve me my bottled water in a glass and I was lucky they had lamb because Iknow that is a safe choice for me.

[mbhbarb]

Oh my gosh, this is wonderful. I've printed everything so I can keep using these ideas. And thanks for the tone of your responses; they let me know that here I am normal. For me, for some reason, that is HUGE.

I went to a restaurant dinner party and tried the "call ahead" approach and was delighted to find that I could square away my menu before the event. It was great; I just went in and ordered along with everyone else. No ordeal. Yeah!

I am so grateful to you all.

barb