Sunday, April 8, 2012

Socially Intolerant?

A few weeks ago it was Coeliac Awareness Week, were you aware?
Does anyone close to you have Coeliacs? or a gluten intolerance?

I am Coeliac and I am also dairy and egg intolerant. By choice, I don't eat any sugar. At all.

I don't speak about it much on here, but it is a topic I feel very passionate about. How could I not? it affects me all day every day. It affects MANY other people in the same way too.

Today I have a few thoughts I want to share...

**PLEASE DON'T EVER take for granted what you can eat. Ever. I can't stress that enough.

**Don't partake in crazy diets. Eat food people!! Eat REAL food!

**Enjoy every mouthful you eat and savour it.

It is NO fun to have to watch EVERY thing that goes in your mouth ...all. day. every. single. day.

It's tiring, its boring *yawn*. It N.E.V.E.R goes away.

Our survival is dependent on us eating. Eating is not a choice. We have to do it several times a day.

It's also a very social activity. Do you ever invite friends over for a glass of water and not serve them morning tea? Do you have a birthday party for your children without food? What about a dinner party without dinner?

On a daily basis I am reminded of how socially isolating it can be to have food allergies/intolerances.

It's the birthday parties we go to, where there is nothing for me to eat. It's the coffee's with friends at the Mall where I drink my water. It's the invitations we don't get for dinner. It's the Friday night after a long week of work when cooking seems all to much and the luxury of takeaways would be great...but there are no takeaways you can eat...even though you live in a suburb teeming with takeout places.

I have no problem going to functions and not eating, but when its every.single.time. It just becomes boring.

I want to share with you an example of how socially isolating food allergies can be...

I have a new job and a lot of the 'rewards' are very much food centred.

Choccies, sweets.. lots of yummy treats. Morning teas full of cake and other things I can't eat.

I can live with that, I bring my own food. When someone hands me a chocolate I tuck it away for my hubby or the kids.

On Friday a week or so ago, at work the Senior Managers put on lunch. That was fine. Good on them for recognising the hard work of their staff. I knew it was happening. I made sure my lunchbox was a bit more exciting than usual.

What I didn't anticipate was the lunch arriving right as we went into a team meeting. I didn't anticipate our team leader telling everyone to 'go load up their plates' and bring it into the meeting.

As I sat there, surrounded with 12 other people with their plates piled high with hot chicken, creamy salads and fresh rolls I suddenly felt very aware of the how isolating it is to have food allergies, and how often I feel like this.

As I fought back the tears and my team members apologised for eating in front of me, I put on a smile and told them, no its fine. Why would I be upset? If I ate it I would be sick, for days...even a crumb would make me sick.

But as I sat there, for 1.5 hours smelling the food, watching everyone eat up I was finding it hard to focus on the meeting, finding it hard to be present. Wishing I could be anywhere but there.

If you are fortunate enough to not live with food allergies, maybe this reaction seems a little extreme... maybe you think I am whining about nothing. But I challenge you. For a week or two, EVERY time you attend a birthday, work function or coffee with your friends, have nothing, have only water.

And some tips for those people around you with food allergies:
*Please don't exclude them because they are too hard to accommodate.
*Please don't tell them, 'bring your own food, you're too hard to feed'. Laughing when you say it, doesn't make it funny. At all.
*Please DO take their allergies seriously and don't try to feed them foods they are not comfortable with eating. When you get sick all the time from food you learn to only trust your own cooking. Its self-preservation.
*NEVER ever roll your eyes. The misconception that everyone is just eating a certain way because of a fad makes it doubly hard to live with REAL food allergies. We are not eating this way because we WANT to be different or difficult.

The people I treasure are the people who go the extra mile. Its the friend who makes a cake you can eat. It's the friend who always buys rice crackers and hummus when she knows you are coming over, its the friends husband who grabs something gluten free at the supermarket so you can stay for dinner. Its the friends husband who washes the barbeque plate to cook your meat so you won't have it contaminated. Its the team leader who has gone and bought little boxes of nuts for me to have when everyone else eats chocolate. Its the little things... and the thoughtfulness.

You see, although having food allergies is NOT the worst thing in the world. It is something you cannot get away from. It is present all day everyday. It is very time consuming.

It is isolating. It is boring. It is miserable if you make a mistake.

I'm not looking for sympathy. This is my lot. I get that and most of the time I suck it up and just deal with it.

But I do wonder if I am food intolerant or socially intolerant because my eating doesn't fit in?

*sorry for the pictureless post... *


Mishaps and Mayhem of a Gluten Free Life said...

So similar to my post take out the dairy egg n sugar tho! I always take my own food to functions but people love them n I have to make sure I crap my little cake. I hate smelling lovely food and not being able to eat anything! I hear you n feel ur pain! N I love those friends who come laden with gf food!

Tanya said...

Hearing you! My son has coeliac disease and an anaphlactic nut allergy- the best day was when a classmates mum made his whole party gluten/ nut free- I was overwhelmed- it was really thoughtful, as you know! My neighbour is great too, for always having appropriate stuff on hand. My work, too, is ace for people with food allergies- would your staff team not think to order in something you could have? I'd make you dinner if you lived near me- I'm keen on a food 'challenge' (in a friendly, non eyerolling way!)

Kylie said...

Hugs. I know your pain, not personally but with a child with issues. Other parents just don't get it unless they themselves have had a similar situation.
I just wish that we had had more time to catch up before I left. I would have made many things for you in Martha.

Posie Patchwork said...

That was fascinating, thanks for sharing, as no one in my family has any food allergies or intolerances. I think your feelings are completely valid, it's your reality. Do you prefer people ask on invitations if you have any 'special food requirements' or do you have to constantly mention it, with some hints at what you can eat?? You must feel frustrated at times, you're allowed to.
Thanks for the education, while i do have friends interstate with coeliac disease, i've never had to cater for them. Now i'll know, love Posie

Fiona said...

I completely understand ... I have coeliac disease and am allergic to shellfish and some fruits (cross-reactions to my really scary latex allergy) plus I don't tolerate nuts and eggs well. Eating out or at social events is a nightmare.

I have one friend who is really good at catering for me - but for most it is too hard and I don't get invited out too much. When I do go and stay with someone, I've become very good at reminding them of my dietary needs in advance and helping them with some easy menu ideas that I can safely eat. I joined a quilting group recently and was delighted to find 2 other celiacs in the small group - our quilting meetings now only have gluten-free treats!

I hope that over time your colleagues become more sensitive and start thinking about you too. It's starting to sink in with my boss - she asked whether the Easter treats she had for all the staff were OK for me (they weren't) and she asked for ideas for next time.

Cat from Raspberry Rainbow said...

This is a wonderful post, Leonie! Unfortunately, I so understand what you are talking about. I am grateful I have some food intolerances, that they are not allergies like yours. I can only imagine how challenging it must be, to have to watch everything that goes into your mouth. I hope you can raise the rood allergy awareness for everyone.

jacksta said...

Elizabeth said...

Oh yes - I have a hubby who is intolerant to gluten and a daughter who has dairy / egg / nut allergies (although the Dr expects her to outgrow at least the dairy and egg allergies, so maybe they're just intolerances?).

We have some amazing friends who always try and make sure they have gf food, and when they drop in (like yesterday) they bought morning tea for me and found a gf muffin for hubby. We were both touched...

We always just take food for our daughter, she isn't even two yet - just easier.

TracyP said...

Love you gorgeous lady <3

Claudia said...

My Eight year olds Bestie is coeliac. She was diagnosed just over a year ago, so we've had a rapid learning curve how to host a birthday party without the birthday girl noticing it's gluten free. (lots of fresh fruit, GF cake made by a wonderful friend, popcorn, GF lollies). I feel for you when you are left out like that. Hopefully as more people become aware you'll find that happening less often.

Helen said...

This post really resonated with me, Leonie. Ryan has always had a mild dairy intolerance which was managed by switching him from cow's milk to soy. Well, now it is flaring up in all sorts of ways, and things he used to tolerate in very small amounts (such as Nutella, yoghurt and cheese) are out. I anticipate allergy testing and diet changes in our future and I really feel for him (and us!). It makes everything just so much more difficult and you're right, it's something that makes you "different" - which isn't an easy ride at all. Big HUGS to you xo

Jenny said...

Wow! What a well written post. I'm very fortunate that none in our family have food allergies or intolerances, but your post has made me feel that I should count my blessings more/ not take this for granted. I don't have any close friends with major allergies or anything (that I know of), but I definately will try to be more accomodating when I come across it, after reading this :)

Miriam said...

I just want to say - being on the outer is hard work - in whatever sphere of life and I applaud your bravery and tenacity. It's actually really good for people to post about their struggles and how it makes them feel socially because it encourages those of us who can eat like rhinos (however they eat!!!) to keep including and keep making an effort and helps us understand it's about more than what you can or can't eat.
Good for you for sharing xx

Tammi said...

This is a wonderfully written post Leonie. We have extended family members who have food intolerances so have learnt to ask when inviting someone over for the first time if there are any allergies we can cater to. We would much rather friends feel included than uncomfortable.
I don't have intolerances as such but due to other health issues I was encouraged by my Naturopath to cut out certain food groups and slowly over time reintroduce them and it's been interesting to learn just what foods trigger it. I have found it extremely difficult at times to be disciplined but the reality for me is that I would rather eliminate certain food groups than end up with heart/kidney disease or die of a sudden heart attack or stroke.
Thanks for sharing your story :)

Lee said...

I remember in my social work degree writing an essay on disability being socially constructed and you make the same point here so perfectly.
What an awesome challenge to set people! Only water at all social occasions - I'd love to see that!
Thanks for sharing.
From a bored person with coeliac disease. ;)

Melissa said...

Great post. My 10 year old is intolerant to gluten, dairy and citrus. He finds it really hard going to parties and when kids bring in cake to celebrate birthdays. Even when we go out, there may be gluten free options on the adult menu, but not on the kids menu! He's not being fussy, he really can't eat those foods. I'm writing a picture book manuscript about this as he struggles to explain his food intolerances to his friends.

Lyndal said...

Yes. To every single word.

Neetz said...

When in doubt...I buy SUSHI!! ;) xxx
Miss you xx

The South African Kiwis said...

You are awesome. And thanks for sharing that, I have to admit that I'd never really sat down and thought about how hard it must be. Now I know and it will be something to be aware of in future. Love and miss you

The South African Kiwis said...

You are awesome. And thanks for sharing that, I have to admit that I'd never really sat down and thought about how hard it must be. Now I know and it will be something to be aware of in future. Love and miss you

Anonymous said...

You made me cry honey. Even I hadn't thought about some of those points you raised and I could slap myself for it.... There are always GF crackers here - sometimes I forget the dip to go with them though BUT I won't anymore. We WILL do dinner here once the madness that is our life Saturday nights is over at the end of May. And it will be GF... Hugs to you. Kel xxxxx

Kim Edwards said...

O Leonie, I so hear your heart - everything you shared is so true. My 10 y/o is anaphylactic to peanuts and intolerant to dairy and gluten. Some friends are great and really accomodationg, then others constantly forget and have to be reminded every time. The older he gets the more upsetting he seems to find being different, and feeling left out. So hard! What would we do without rice crackers and hummus!

Simoney said...

What an awesome post - pictureless or not.
How did I miss it??
Go you Leonie - make us aware.
Since I now have a number of dairy-free friends in my life, as well as a Gluten intolerant kid, I have become so much more aware.
It's not hard to go the extra mile to make sure someone doesn't feel excluded, really its not.
Love you HEAPS.
Your company is worth the extra catering effort!

Lakota [Faith Hope and Charity Shopping] said...

I'm so sorry, that must be really hard to deal with. Sadly it seems to be getting more and more common that people have multiple food allergies/intolerances so I hope it will get easier in the future. I noticed in a cafe I was just in that their whole cake display was GF, so hopefully things are changing a bit. My BIL has a severe nut allergy and one of my son's friends can't eat dairy or eggs - I would never not invite them round because of this, it just takes more thought.

I just read your birthday post too though - your cake looked amazing and what a lovely friend.

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