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I'm 29 and I've Had Selective Eating Disorder All My Life...

mykell

mykell
Total Posts: 5
Joined: Aug 2012

Hey everyone.



I've always had this disorder ever since I was 18 months old. It's one of those things where I felt it was something only I had but now, after finding out that it does actually have a name and that there are thousands of other people with the same thoughts and feelings towards food, I feel I'm no longer alone with this.



I'm 29, nearly 30, and since I was 18 months old I've had SED. Apparently I started off normally but after I very badly scalded myself I just refused all food completely. It was only after about 6 weeks I finally started to eat * which then steadily grew to * then * and *. I pretty much had this diet for years until I grew older and became a teenager and slowly more things were added like *,*,*... basically anything bland with a very basic texture.



Throughout my time with this I've seen doctors, specialists, hypnotists, dieticians etc but nothing has worked. One doctor said I should be forced to eat, left in front of my plate until everything had gone, one said that I had forgotten how to swallow...



I'm kinda on the autistic spectrum, diagnosed recently with mild Asperger's and Sensory HyperSensitivity - whether or not this is a factor contributing to the SED I'm not sure.



Of course, living on a diet of starch and carbs eaten in large quantities meant that I piled the weight on and, at my biggest, I weighed in at around * when I was 28 years old. A diet shrunk me back down to * in a year (bringing along with it a bad case of gallstones).



So that's pretty much my story. I would love to beat this! I've missed out on so many opportunities in my life because of my fear of part of the plan being a meal out or something. I've never really gone on school holidays or field-trips because of it.



Did anybody here manage to get help with their SED? Are there any specialists in the UK I could try and get an appointment with?



Thanks to anyone who can help, and hey! =)

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Posted on September 07, 2012 at 10:43 AM
66 Replies

fluffypenny

fluffypenny
Total Posts: 176
Joined: Jan 2012

re: I'm 29 and I've Had Selective Eating Disorder All My Life...

Hey

im in a similiar situation to you. Im being treated for EDNOS with anorexic tendencies.
Ive had a very bland diet my whole life, and refused to eat school meals. The texture of a lot of food feels very uncomfortable.

Im having an assessment for aspergers this month! I reckon it could be a contributing factor for your SED because aspergers can cause food problems. Im 20 and was told aspergers is more common in boys than girls, so it isnt looked for as often in girls.

I dont know about treatment options have you asked your GP? Are you having treatment for aspergers?

smiling

Posted on September 09, 2012 at 10:46 PM

mykell

mykell
Total Posts: 5
Joined: Aug 2012

re

Heya =)



Yeah, I was like that. I've never had a school meal - every day it was a packed lunch of the same things. The safe foods of * a * and *. Food with any kind of texture makes me feel very uncomfortable - even the mere sight of it!



I was assessed for Asperger's a couple of years back after every online test kept giving me scores of the mid 40's. Their diagnosis was that I had pretty much every characteristic but, because I could have a conversation with them, she didn't think I had it. Which is pretty unfortunate - I could only hold a conversation with her because I'd spent ages making sure I was able to cover every base symptom wise. If I'd gone in cold I'd have been a very quiet, non eye-contact person!



It's probably because of that which meant I didn't really have any treatment for AS. I was, however, referred to a psychologist for help with anxiety which I did also suffer with. That helped me a lot with that particular aspect but it hasn't solved everything.



There's a factor of AS which is Sensory HyperSensitivity which I feel I have. I wouldn't even know where to begin in getting that officially diagnosed but every quiz, test and checklist I can find online pretty much spell it out for me. One of their big factors is being hypersensitive to texture and taste, which could be a further contributory factor to SED. That's what I initially thought it could be when I first discovered it.



I'm planning on going back to see my GP very soon with the SED information to see what can be done with it. Back before all the information I had about SED and AS I was sent to see someone who dealt with NLP but, because of the misdiagnosis at the time, I don't feel it really addressed what was going on in my brain.



How far have you managed to go with your doctors? Have they referred you to anywhere regarding SED? =)

Posted on September 10, 2012 at 12:27 PM

fluffypenny

fluffypenny
Total Posts: 176
Joined: Jan 2012

re: re

Hey

Im sorry to hear you havent been able to access services for AS.

Ive got anxiety aswell. Its great that youve found treatment for it helpful. Ive been referred for anxiety treatment, but havent had an assessment date come through yet. What strategies have you used to control it? I try and use positive self talk when im feeling anxious such as 'youve been in this situation before and you were ok then so youll be ok now' Sometimes it works, other times it doesnt lol.

Ive never really heard of Sensory Hypersensitivity, But after looking online, I can tick off quite a few of the examples! Especially the one regarding texture and taste.

Doctors have been really helpful - ive been given medication to help with anxiety and depression, and see a therapist. Its working but really hard work - ive been trying to mix textures and its been pretty tough. I started combining two foods with a similiar texture and created a sort of anxiety ladder for foods I could mix with different textures that would result in a little anxiety, but not to much, and have been going from there.

Ive got my assessment on the 24th of Sept so im gonna see what they say

What about you? Have you contacted the GP? smiling

Posted on September 13, 2012 at 12:16 AM

mykell

mykell
Total Posts: 5
Joined: Aug 2012

re: I'm 29 and I've Had Selective Eating Disorder All My Life...

My big problem was that I completely over-analysed a problem and started to grow a massive 'what if' scenario tree with an infinite amount of branches.

This wasn't a particular anxiety of mine but it's a simple one I can use as an example. Lets say I had an anxiety of walking down the street. My 'what if' tree would start growing. What if I bumped into someone I didn't like? What if I fell over into the road? What if a car mounted the pavement? What if I bumped into someone? What if I bumped into someone and they started getting aggressive? What if I couldn't handle that? What if people stopped and watched? What if.... what if.... what if!!!

The 'what if' tree needed to be cut down.

Ooooh, metaphor!

I can't remember the exact method details but it was, in a nutshell, looking at these what-if scenarios and seeing just how likely they were to happen, then figure out what I'd do for the most plausible possibility. I quickly realised, when things I got really worked up about were talked about and written down and broken down and analysed, just how petty, small and insignificant they actually were when before I thought they were a big deal.

The big thing I came away with was that if a problem didn't exist then there's no reason to worry about it; especially hypothetical situations that had little or no chance of really happening. What-if problems only existed in my mind, and as soon as I realised that then I found it a lot easier to ignore them. I also realised that a problem nearly always had a solution. Yes, sometimes it might make someone angry or put someone out, but it still had a solution.

That was the technique used on me, anyway. It was pretty effective!

Soon after I finished treatment I was at work and as browsing the online job vacancies. I spotted one that I liked the look of and, on a whim, decided to just apply for it and to hell with the consequences. I got the job! =)

As my therapist said to me - It's only to be a little selfish now and then. =)

Posted on September 13, 2012 at 11:45 AM

fluffypenny

fluffypenny
Total Posts: 176
Joined: Jan 2012

re: re: I'm 29 and I've Had Selective Eating Disorder All My Life...

I do exactly the same lol.

How many sessions have you had roughly for anxiety?

I usually have anxiety about my health, and fearing ive got terminal illnesses, but its def. improved since I stopped researching my 'symptoms' online.

Apparently meditating is suppose to be good for anxiety, but it takes a while to have an effect, so im thinking of giving that ago soon.

tongue out

Nice one on the job front!

Posted on September 13, 2012 at 11:55 PM

mykell

mykell
Total Posts: 5
Joined: Aug 2012

re

I had about 10 sessions I think, each about an hour or so long. They were very good at putting my anxieties into perspective which I felt helped me realise that they weren't really worth worrying about. My anxieties were more towards social situations mainly, and the anxiety of the possibilities of drawing negative attention towards myself.

I would definitely recommend it! =)

Posted on September 14, 2012 at 11:48 AM

fluffypenny

fluffypenny
Total Posts: 176
Joined: Jan 2012

re: I'm 29 and I've Had Selective Eating Disorder All My Life...

My anxieties are centered around social situations aswell, but the more I put myself in uncomfortable situations the easier its getting and the anxiety is becoming less intense. So im hoping by taking these self help measures by the time I start therapy for anxiety it will be a case of 'tieing up the lose ends' so to speak. smiling

Posted on September 17, 2012 at 8:11 PM

bunnylove

bunnylove
Total Posts: 531
Joined: Jul 2011

re: I'm 29 and I've Had Selective Eating Disorder All My Life...

Hi I spotted your thread and wanted to say I saw a TV programme about this and it affects men and women. Seems a few had very adverse expeiences early in life with food . Treatments included learning to tolerate just smelling and licking the food to get used to it. A baby does that naturally and that is how they gradually learn.. My daughter used to only like a very limited range as she was quite a cautious child in other ways but she went to residential holiday places doing outdoor activities and was very hungry so she joined in eating new food combinations. She had disliked all mixtures but having new friends encouraged her also to try more.

I am surprised a therpist thought nobody could converse if they have AS. My daughter has worked with autistic people and I volunteer with them. People can range from severely withdrawn autism to being difficult to spot. People with autism can have conversation but they tend not to find it easy to know when not to take things literally. We had people with Aspergers in my OU course and they had run businesses!. One did mention her dislike of a range of foods. Its a shame to be limited by anything we can conquer. I have OCD and it is a challenge to allow variations in my routine. I am very anxious about changes in eating or exercise routines but I am in the OU and want to be able to do new things like I have a chance to meet up with a tutor and that involves social eating.

You sound as if you are doing reallly well at thinking more logically about anxieties.There is such a difference between what could go wrong and what actually does.

warm wishes

bunnylove

Posted on September 19, 2012 at 11:36 AM

fluffypenny

fluffypenny
Total Posts: 176
Joined: Jan 2012

re: I'm 29 and I've Had Selective Eating Disorder All My Life...

Hey bunnylove



I am able to hold a conversation, even if awkwardly, which is why I thought perhaps I dont have aspergers, but I have my assessment for it next week so I shall soon find out



After reading your post (especially the part about your daughter) im much more confident I will be able to 'overcome' these barriers.



Hows things for you?

Posted on September 21, 2012 at 5:08 PM

bunnylove

bunnylove
Total Posts: 531
Joined: Jul 2011

re: I'm 29 and I've Had Selective Eating Disorder All My Life...

Fluffypenny thank you for asking. Yes my daughter was almost mute in primary school but eventually was accepted into a group in secondary. I think getting her first computer and talking online really helped her. She is still shy but got a degree and moved far away into her own flat. She joined things and made friends and hr cupboards are full of interesting ingredients!. I am struggling a bit as my husband has obsessive tendencies too and is being quite fanatical about his exercise routine. I am trying to put my 'blinkers ' on and not go into any harsh routines. I only do voluntary work and the OU so I like to be slow in the morning when I can . I think it is good to find out what helps you and stick to it and never mind what everyone else is doing. I am trying to!
Love
Bunnylove xxxxxxxx

Posted on September 21, 2012 at 11:30 PM

fluffypenny

fluffypenny
Total Posts: 176
Joined: Jan 2012

re: I'm 29 and I've Had Selective Eating Disorder All My Life...

I agree on finding things that help and sticking to them. I feel best when im busy, but like my mum said it isnt possible nor healthy to be busy constantly.
What did your daughter get her degree in?
I wanted to do a degree and planned on doing so, but I was scared of the change so decided against it, but I regret it now because I would have been graduating this year (Im 20) But I suppose I can always do it when I feel ready, whenever that may be lol.

xx

Posted on September 25, 2012 at 4:31 PM

bunnylove

bunnylove
Total Posts: 531
Joined: Jul 2011

re: I'm 29 and I've Had Selective Eating Disorder All My Life...

Fluffypenny you are so right there is a gap between being frantic and happily absorbed. Sometimes when I have a few important commitments like all this autumn I can feel panicky that I have taken on too much but I feel a void if there isnt enough! My daughter graduated in psychology, no wonder as we were always analysing people and situations. I had CBT when she was small and it has influenced me to try to see different angles and viewpoints. When you are ready it is never too late as a little life experience counts when looking for jobs, even after graduation. My daughter hasnt yet entered her proper career after 2 years so starting late could still mean you would catch up. I should have gone to college to improve highers and then go to Uni but I thought I was too old. I wonder if boredom has contributed to any of your problems as a challenge focuses the mind.
Love
bunnylove xxxxx

Posted on September 25, 2012 at 10:23 PM

fluffypenny

fluffypenny
Total Posts: 176
Joined: Jan 2012

re: I'm 29 and I've Had Selective Eating Disorder All My Life...

Sometimes I can spend weeks worrying about an upcoming event and afterwards I think to myself 'what was I so scared about'?
Have you had any courses of CBT recently?
I had my aspergers assessment this morning and the practitioner doesnt think I have aspergers syndrome. But after asking me about my interests he told me I should consider studying medicine. I think you are right about boredom contributing to my problems. When I was at school I had no MH problems (that I know of) but since leaving school back in '08 theyve developed slowly.

xx

Posted on September 26, 2012 at 3:15 PM

bunnylove

bunnylove
Total Posts: 531
Joined: Jul 2011

re: I'm 29 and I've Had Selective Eating Disorder All My Life...

Fluffypenny I had a therapy in 2008 which was Compassionate Focus therapy. I recommend you try the Compassionate Mind by Paul Gilbert which was the basis. I found it helped in all sorts of ways, especially with learning not to see the worst side of things and to be less self blaming. I see a lack of confidence emerging in the picture you are giving me and I wonder if you fear failure. I certainly do but the best thing is to try things anyway and if we do badly, so be it, that is beter than doing nothing at all. It doesnt mean we are hopeless but that we need more practice.I thought my memory had gone completely when I had forgotten my dance routines so I am tackling that by having a quick runthrough at home straight after classes. I dont feel like doing it then but it helps it to stick. I was worried about the chalenges facing me this Autumn but I am managing to tackle the priorities this wek and I feel better. When I left school and stepped into a hated office job which my Dad had approved of, one with prospects in the civil service I felt I had left happiness behind me. You sound similar. Our minds will conjure up something to think or worry about in a vacuum. Do you have the necessary school qualifications for medicine? Otherwise could you make time to get some and will you get the financial support while you study? These are starter questions. I have certainly heard of people starting medicine a bit later and even becoming famous in their profession. I think it would be hard work but very rewarding!
LOts of love
bunnylove xxxxxxxxx

Posted on September 27, 2012 at 2:23 AM

fluffypenny

fluffypenny
Total Posts: 176
Joined: Jan 2012

re: I'm 29 and I've Had Selective Eating Disorder All My Life...

Hey bunnylove,

I do fear failure - But from Cognitive Behavioural Therapy ive learnt its ok to be only 'ok' at things too.

What style of dance do you practise?

What are your plans this Autumn?

I have some of the qualifications I would need for medicine, but im unsure if it would be the right route for me, but maybe it is? lol. I dont know.



cxcxcx

Posted on September 28, 2012 at 3:55 PM

bunnylove

bunnylove
Total Posts: 531
Joined: Jul 2011

re: I'm 29 and I've Had Selective Eating Disorder All My Life...

I do contemporary dance Fluffypenny and we regularly take part in various performances as well as Jazz, and adult ballet but you mustnt think of me as being great at it as I am not young now and am additionally limited by my bad joints. However we often use our own choreography so we can use the movements we are comfortable with. Going onto a university course wouldnt be a good idea until you know which one you really want as you may not be allowed to change and may not get funding if you did. Maybe doing some voluntary work would help you find out what really interests you. If you volunteered with old or disabled people you would see if you liked looking after people. I do think more interests help us.
Love
Bunnylove xxxxxxx

Posted on September 29, 2012 at 9:00 PM

fluffypenny

fluffypenny
Total Posts: 176
Joined: Jan 2012

re: I'm 29 and I've Had Selective Eating Disorder All My Life...

That sounds like so much fun, I always wished I could dance but im terrible hahaha.

Uni isnt for me at the moment, im trying to get more life experience because I think it would be better for me and make me feel better in the long run.

Im having a meeting tomorrow with a volunteer centre and I also have a job interview soon. I love love love keeping busy doing things I enjoy. Aside from dance what else do you do in your free time?



xxx

Posted on October 03, 2012 at 7:41 PM

bunnylove

bunnylove
Total Posts: 531
Joined: Jul 2011

re: I'm 29 and I've Had Selective Eating Disorder All My Life...

Fluffypenny
when I was young I lived a much more hectic life, I would say my body got little time to recover so little wonder I developed a back problem at 29 and needed surgery. I took a long time to recover and was never quite the same . I left work at 32 to have my daughter and never worked again but eventually when she had left for Uni I started my volntary work with special needs,also help my disabled Mum and do the Open university. That and looking after my husband and home keeps me busy! It is quite challenging when we have a performance coming up or if I am at an assignment for the OU!

I am glad you are not starting anything when you are not sure.Maybe later , you will feel the time is right. Well done for volunteering as I hope they will help you find something you enjoy and it will enrich your life as it has mine.

Love

Bunnylove xxx

Posted on October 04, 2012 at 11:30 PM

fluffypenny

fluffypenny
Total Posts: 176
Joined: Jan 2012

re: I'm 29 and I've Had Selective Eating Disorder All My Life...

Thanks Bunnylove. I hope voluntary work will fill the void I have in my life at the moment.
I have all these ideas about things im going to do but get scared so back out lol.
I think youre right about the importance of finding things you enjoy. Last night I was helping my younger sister with a psychology essay, and she asked why I wanted to help her and I said I really enjoy it and it brought back memories of when I studied Psychology

x

Posted on October 08, 2012 at 2:06 PM
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