SOCIAL ISSUES

[susan]

Oh I have social issues, in childhood and now. I think it is fortunate that now there is a name for it,,,,if it can be accurately diagnosed by sensitive and aware parents and doctors.

I had one set of grandparents who were sensitive and another set who were not. Guess who I was closer too? Guess who I am still closer too?

I did learn that the world was a difficult place to live in. I am still surprised how some people can just smile and get away with anything..good or bad.

I was introduced to birthday parties but quickly got disillusioned by the entire concept. Not only did I get sick on the cake and ice cream, I usually had to give the gift away as well. I only had one birthday party of my own, I can remember at age 4. The only thing I really liked was the pony rides.

I did try to make friends. One time mom took me and a playmate to the circus. Must have been 5-6. I wanted the friend to have a good time. I wanted to fit in. We got cotton candy for the friend. I didn’t want to seem different so I ate some too. I threw up before I could find a “ladies room”. Then there was the shame and humiliation of that. Home became the only safe place. I became reclusive. I can still stay at home and be perfectly happy.

In elementary school I was always put in the "slow" class. They didn't say so.... but everyone knew which group they were in. I learned I was stupid. I have now concluded with my adult thinking, they were stupid in that they could not reach me. I was so malnourished and had failure to thrive basically, I could not learn. Today there would be intervention.

As a teenager, everyone drank pop or alcohol. I did neither. So i was still in the slow classes and still didn't fit in. Thank God for my grandparents. I thank God for them everyday. My parents were too wrapped up in their own nonsense to really help. I survived by the Grace of God. (I have a right to my opinion. You have a right to yours). I still was spending as much time as possible with my grandparents, even as a teenager. Their support kept me going.

I still think I am about 10 or more years delayed psycho/emotionally due to trauma of not understanding this disorder and lack of support from parents to advocate for me at school or with peers. I have pushed myself to overcome. As an adult I can design my life which is safe for me. Fortunately I married a man from the "old country" where everything is cooked from scratch. Their staple is white rice. Divine.

I truly have truck loads to unload,,,but trying to be slow about it.
Susan

[susan]

All in all, connecting with others is important. This is why I was interested in a convention or at least, better research.
If youngsters could meet others...it would normalize things some.
Susan

[colormist]

I think the only way I survived being a child was dextrose candies, milk, potato chips, and the fact that my brother was a picky eater, too. I went hungry very frequently (preferring to starve myself rather than feel incredibly ill). My mom tried her best to feed me things that were acceptable to me and my brother. She would tell my babysitters what we would eat and what we wouldn't eat, but they'd still feed us unsafe stuff and demand we clear our plate (spaghetti O's, white rice with sugar, punch, etc.)

I got punished a lot for not eating all the baked beans on my plate (we were poor, so not eating food on my plate was a waste of money).

In elementary school we had teachers that would walk around checking to make sure we cleared our trays and ate everything. I would put a napkin on top of my tray to hide jello, pudding, fruit cups, etc. The teacher always noticed and would make me stay later to finish everything on my tray. I never did.

For birthday parties, I would try to eat cake and ice cream, but I was more interested in the potato chips. My parents knew I wouldn't eat my cake, so they let me blow out the candles and eat chips.

In middle school I had a (poor) friend who shared her chocolate bar with everyone. She broke it up into 6 pieces and gave me a piece (even though I tried to refuse). I tried to eat it (to not show disrespect), but ended up with it melting in my hand.

When I found the diagnosis and this forum, I was so happy. I told everyone what I had (I knew what I had before I even had diagnosis) and went happily about modifying my diet. I had a justifiable excuse to NOT eat anything that wasn't safe. I only have a few incidents where people try to feed me things unexpectantly and I have a sudden wash of feeling like I'm 8 years old again. Thankfully those situations are few and far between. It's amazing how a clear definition of your condition can make your whole life different.

[ukbill]

Colormist,

I am with you on that one!

I remember having to eat food that made me ill because there was nothing else to eat..

No Glucose sweets for me (for which I am thankful)

I remember buying plain ice cream cornets ( which were largely sugar free, I could eat two before I started to react) from the van that used to come round because I wanted to join in.

Yes it was hard at times, for friends parties I took my own food round and for my birthday cake I had two! one normal one (for everyone else) and a Pork pie with a candle in the top for me..

After a full meal trying to eat a slice of pork pie is just too much.. so today I really don't like them much unless I have no alternative.

In some ways things are harder now with everything containing sugar but then there is also more choice all the time as well.

Some of the fish available now we would never have had back then, let alone the prawns, squid etc..

I was 14 when my parents bought their first Freezer (they really were rare things in those days!)

It was a revelation.. ad lib food for the first time and so long as I cooked it.. (and washed up afterwards) I was able to really eat for the first time in my life!

I went from being the second smallest in my class to being by far the tallest in 2 terms! It hurts growing that fast!

I took a pack lunch to school so I was safe.

Later I got a dispensation to go to a local cafe for my lunch. Burger and chips or egg and chips.. and of course a big mug of TEA.. = Heaven!

[julienc]

I believe my years growing up would have been dramatically different if my brother did not also have HFI. I could always rely on the fact that he had the same "weirdness", and my mom basically gave up and just let us eat what we wanted. If it were only me, it probably would have been a different story. We have no other siblings, so it was just us two with all the same tendencies.

Oddly enough, in reflection I seem to have been empowered by the whole experience. I have always tended to march to the beat of my own drum. I rather enjoy being 'different'. I'm not saying there weren't challenges - to this day I tend to have anxiety about social events that involve food. Weddings, dinner parties, banquets - they all stress me out. But largely I feel like I came through relatively unscathed. I have no qualms with being the odd "man" out and at times relish it.

[susan]

Comradery helps one be able to face the world sharing a common experience. It helps to normalize things.

[susan]

I get stuck in my moods sometimes. I know no one has intentions to stress me out. I have recently started back to work after a period of "freedom", and feeling sorry for myself.

I have to come to terms with many things in my life.....
I once had a therapist friend ask to buy the "royalty rights" of my "family of origin's" saga. Implying someone could make a movie out of my family's drama. It would be a comedy and a tragedy. It would certainly seem too stupid to be that tragic. Nevertheless, one could laugh, cry, laugh and cry...CRAZY STUPID. That is why I became a therapist. I tried to make good out of the bad. Lemonade metaphor out of lemons. (ha ha ha...we prefer the lemon over the lemonade...how funny. It is better to laugh, isn't it).

So I sometimes try to figure out my family, wonder why things are the way they are, then I wonder why I had to get HFI and not my brother.... then struggle trying to figure out what to pack in my lunch everyday.

I get so tired of the same old same old. Yes, I am happy to have safe food any day.

BUT SOMETIMES,,,,I GET SOOOOOOOO TIRED.
So I might slip something in for a slight variation of taste.

I face the day in and day out drudgery of work, feeling like just another cog in the wheel of bureaucracy and paperwork then sometimes the simple act of eating seems so......(I can't find the right words.....) boring, mundane, to down right impossible sometimes even to join co-workers in a social....

BYOF=BRING YOUR OWN FOOD, the only safe thing to do.

I just need to write out some of my emotions I guess. SORRY.

[charlie]

Hi Susan,

don't apologise for sounding off your emotions up or down. That is what this board is here for too as everyone can identify exactly with you. Everyone has their ups and downs about it, the secret is finding a way out of that mindset.

As Colormist said recently about food, food is survival for an HFI-er not so much a pleasure and she is right, although, with a bit of imagination there are ways to add variety. Maybe set yourself a challenge to invent a new meal, maybe we could all do that and then everyone try each others recipes out......

As for the whyand wherefore, who knows? life is a game of roulette and for some if it isn't one thing it may be another. I wonder with Meg, if it is genetic, why, what have I done? Then I blame the man - always good to blame the man!!!! My partner panicked about fatherhood and ran quite early in the pregnancy so I now blame him, we met, he contaminated my genes and then b******d off!!!!!

But the main secret of survival is to try to rethink your attitude to food. I draw up a weekly meal plan for megs, some safe old and some new and varied, similar pattern each week but different each day. It saves that having to think when you are tired and exhausted which is when it always seems harder, makes it easier for shopping and adds that little challenge to try a new recipe.

and the other secret is...... remember you are not alone, we are all here......

[colormist]

Yes! I definitely recommend trying a new recipe! I started a couple HFI Pinterest boards. One has strictly safe foods (and includes recipes to make fancy dishes--with HFI edits, of course) and another board is just for this MIGHT be good if it was adjusted for HFI. I look every day for new recipes to add to the boards (and I don't usually find much--people post a lot of desserts).

I personally love making pizza and making new pizza combinations. That's my treat once a week and the one thing I actually do enjoy eating (which usually means I end up stuffing my face and laying around regretting my inability to control myself around delicious food).

Whenever I go to a party or event with friends or family, I pre-eat and make sure I have some small snacks in my purse. That way, if there is 100% unsafe food, then I can munch on purse-snacks. If there is a couple things to eat (that's usually it, I don't ever expect to be able to eat more than one or two items), then I stick to that stuff and focus on socializing.

I, personally, just wish people would stop focusing their parties around food. Some of the best parties I've been to were about dancing, bonfires, and music, but nowadays people just want to eat.

[susan]

Thanks for the support. The job is really time consuming. I am good at what I do which makes it worth while. Living with HFI allowed me to develop empathy which is a "must" for my line of business. To see the change and growth in people is wonderful. The ironic thing is.....a therapist sometimes need to vent too.

I guess the daily grind is getting me down. When one starts a new job, you may not have earned days off. I left all work at work tonight.

My husband is a better cook. I am a better baker. I have not had the time to make something for myself. I need some time off.

We really do have to ponder about what we put in our bodies. Everyone at work is able to buy "easy" or "fast food". Seems so easy for them.
My husband will make oatmeal and put it in "to go" containers. It might be my lunch, not breakfast. It is fast if it is already packaged for me. Easy to grab, put in my lunch bag and carry.

One day at work, I was eating Matza bread/crackers...and really enjoying them. Everyone was so curious as to what they were. To me, they were tasty, easy to pack and carry, and ready for consumption. My "fast food".

[shereebailey83]

Wow Susan, after reading your first post it was like reading me own life.

I've always been a reclusive person due to nobody "getting me". Nobody understands how HFI runs your life, you slip up once and you pay for it for a days after that. It makes me a very angry person underneath, yet im such a kind and caring person on the surface. Being a child was so hard, i look back now and i'm not sure how i survived it, it is no wonder these days I prefer to be inside and not wining and dining, I even had teasing at school, I was known as the "sick" kid, I was so malnutritioned, i was slow and misunderstood at school, I weighed 25kg's up until the end of highschool so I was different
I have been sooo sick since giving birth to my son last year, it has been 10 long months of continuous problems yet my diet is the best it has ever been, all of a sudden i am so over sensitive to foods that i used to be able to eat, it damn well sucks.
I don't even think my husband understands anymore, everytime i get sick now i see an anguish in his face, He used to be so good and supportive and but i guess after months and months of being sick its enough to make anyone lose interest

I'm feeling like more of a social outcast these days and i don't understand why, i should be used to everything by now? Its been 28years!!

That's my vent, hope you don't mind me imputting my life story

[susan]

I enjoy not being the only screamer. Life is so funny.
Hey....you ought to look up all my old posts. I have really [glow=red,2,300]vomited
[/glow] it all out in some other posts. There is a pun in there somewhere.

For a good laugh ...go read some of my old posts. This last one is mild.

[susan]

Oh Yes...I am getting impatient waiting for my blood results. My blood was sent April 17th if I remember correctly.

I will "eat my hat" if I don't show what Tolan tests for.
Let me see.....I wonder how much fructose would be in my hat? Sarcasm.

[charlie]

Don't worry, it takes 6 to 8 weeks for results usually. we were told 40 days so ours are due any day now.......... Meg had hers taken at the beginning of April so sorry you may have to be patient for a bit longer.....

As for the fructose in your hat - I'm sure Tikitavi will be able to tell you!!!!!!! Sorry - couldn't resist. Tried to sit on my hands but couldn't as I've broken one......

[flanagan]

Susan, wow, thanks for sharing that. Your experience makes me appreciate the great job my parents did in raising me and my brother. I'm in Julienc's boat. I don't really have any social issues. People tend to describe me as self-confident (or egotistical lol). I think that my taste helped contribute to a sense of individualism and was a strength for me.

I do have to confess one thing. I hate buying donuts, for work functions or the like. There are so many kinds (flavors) of those things and sweet-eaters seem so particular about which ones they like. If I ask for a random assortment, I worry that the shop is going to give me all the unpopular ones lol.

Other than that, people sometimes give me strange looks when I can't properly identify fruits. They'll say "Buy two mangos from the store" and I'll have to say "Can you describe what a mango looks like?"

I use to sell my Halloween candy, or trade it for sweettarts. Loved Halloween all the same.

Vent anytime, it's what the Internet is for after all

[susan]

I do pretty well moving ahead.

This is the first time in my life I have really had anyone like me.with whom I can process. I have been alone.

An injury just "patched up" may need to be cleaned out later if it was not properly cleaned and stitched the first time.

And I have been so focused on over coming....I have not allowed myself to process. Trauma is integrated not erased.

Trauma is anything which is stressful, over a prolonged period of time, unprocessed and misunderstood. Each individual's stress is different depending on frequency, duration, and situation. Stress and trauma for one, may not be trauma for another.

So thank you for allowing me the freedom to process at my own speed. I also have the grief of infertility and 2 failed IVF attempts. This equals at least 3 lost babies for me.
Seminal fluid contains fructose....

So do I wonder about things? Yeah, I do.

[sarosh]

I agree with you Susan. I have been treated for PTSD ,but as Fred says, reducing fructose as much as possible eg no more tooth paste,no more chewing gum has really helped me get out of the black hole of depression. Good luck.

[susan]

This almost brings me full circle. It is about the one year anniversary of the failed IVF's. Which really spurred me on to explore and investigate deeper, to wonder about the lack of research; and the desire to be promote research by having a convention and getting tested. I decided that only with proper testing can our voices be heard then science to understand the importance of understanding HFI. It is so wonderful to see the very very young be diagnosed or at least be considered. They will not be alone, they will have support and understanding.

There are also other families here who have lost children. Just because mine could not be seen by the naked eye, does not make them less real to me. Along with it is the lack of connection with the past and future, infertility can be the loss of a hope and a dream.
Grief is normal. Grief delayed is just that, grief delayed.

Again, I want to see more research.


I am the family historian and the closest in a caring relationship with my maternal grandparents. I have preserved pictures, artifacts, and information. Finding a distant cousin to give these to, seems to be the best choice I have, to pass the information on to future generations. I can also publish on the internet if by chance, some relative develops an interest.

I go the extra mile, to real labels and avoid all unnecessary additives and sugars. And sometimes that is tiring.

Help me understand statistics. I have read.... HFI could be 1 in HOW MANY THOUSAND? For me..since there were just two children...
isn't that a 50-50 chance? There seems to statistics for the mass population. But what if you are in a family with HFI? Genetics brings the numbers much closer to home.

[ukbill]

Ok the way I understand it and if I'm wrong please someone correct me, the way it works is as follows.

The incidence is between 1:10,000 and 1:20,000 of the population.

So how do we get HFI and usually only one child from a relationship has HFI?

In order for us to have HFI both parents need to to be missing one of the genes.

But to complicate things they need to be missing alternative genes.. not the same ones!

If both parents are missing alternate genes that allow for the breakdown of Fructose then statistically one in 4 children will have HFI.

However the risk is increased with those of us with HFI of having an HFI child, because we express none of the genes if we have children with a partner who is expressing only one of the genes then 1 in 2 children might have HFI.

If our partner is expressing both genes then there is no change of us producing an HFI child.

This is how I understand it or how I have simplified the genetic data I have read.

I am sure it is much more complex than this but if I am wrong please let me know.

It is really just a logic statement I am sure anyone with a good grasp of maths can explain it better .

Hope this helps.

Wishing you all the best with the IVF I know how stressful it can be.. which is of course self defeating the more stressed you are the less likely it is to succeed.

I know of many couples who have been unable to conceive, but after adopting a child suddenly the children start coming naturally.. strange but true.. could you borrow a child off a relative for a few weeks to see if that works?

Keep smiling.

[denverjay]

ukbill, your math is correct. There would be a 1 in 4 chance of having an HFI child if both parents are carriers of the recessive gene.