I recently saw a post on a SED forum from a woman who worked with youngsters at a community centre. She had recently found out one of the kids (13 year old girl) had been diagnosed with SED. She was on the forum trying to find out more information and to try and understand what SED is. Especially difficult for someone who admitted they would eat and try anything. I was very impressed she was going to such lengths and genuinely seemed to want to try to help the young girl overcome her issues.Her biggest concern was that the girl seemed to be a bit of a loaner and preferred to sit and draw instead of joining in with group activities.The main activity seems to have been cooking and baking which understandably the girl with SED would not want to be involved with. So the woman was asking for help on how to get the young girl more involved, and maybe even get her cooking.
After leaving my own thoughts on the matter (basically move away from the cooking and find other group activities to do that don't involve food, perhaps arts and crafts and get the young girl to join in with that without the pressure of food), it got me thinking about how hard socialising is when you have SED. Like a lot of sufferers I have had SED since I was a child, and it did cause a lot of problems, especially making and maintaining friendships. It still does! Unless you have an issue with food, you don't realise just how much food is involved with nearly every social activity. During childhood sleepovers were a nightmare with what to have for dinner and breakfast ( let's order in pizza - eww!), watching a film is awkward (I got popcorn, salted and buttered - or whatever flavours they come in- as everyone likes popcorn! Er, no!), girly nights less enjoyable (I have nachos! Or I have Doritos and dips because everyone loves them, right! Nope!), and even children's parties were boring as I had to eat before I went as it was unlikely I would like anything there! Kids can also be cruel and pick up on any weakness, so being the fussy eater or freaky eater was not helpful when making friends. You were also the child, parents hoped their children would never ask could stay for dinner unexpectedly!
As I got older it remained a problem. At uni I could never join in the money saving joint meals as it nearly always involved some kind of pasta thing, or baked thing or other "foreign" food. I am also so particular about how something is prepared that even if the menu was something I would eat it was still very stressful for me. Likewise, "lets get a takeaway" often excluded me unless it was from the chippy or McDonalds. Chinese, Thai, curry, pizza, kebab etc were all out for me. Birthday and other celebrations with a meal out were another nightmare, as most restaurants I couldn't eat in. Sometimes friends would choose to have their birthday meal at a restaurant where they knew I could eat. On one hand this was lovely and thoughtful and clearly showed they thought a lot of me and wanted me at their birthday/celebration. However it also made me feel terrible as somebody else's birthday ended up being about me, and not them, which is totally wrong. Their favourite food could have been Chinese but they would choose a Harvester for my sake. I felt so terribly guilty. Plus it was very hurtful when they suddenly stopped inviting me, although I understood it, it was still upsetting.
Even now its hard. For parties, I have to eat before I go just in case there is nothing there. If I am lucky there will be some bread rolls and a cheese board so I can make myself a sandwich, or if not hopefully crisps, although there have been many parties where there was nothing I could eat or the food was contaminated by tomatoes or onions etc, and I ended up flipping starving my the time I got home! Meals out, if I know the restaurant and I can eat there I go, if not I make an excuse. Dinner parties often I will make an excuse and arrive after dinner. Depending on who is there and whether the host knows about my SED I might get through it with a separate meal made for me, although if there will also be people I don't know, I find this very embarrassing. Also friends do get very fed up with having to cook for a group of people and then cook something separate for me. Especially as they have to be so particular about ingredients and preparation. And I understand, its a complete pain in the backside! Its not like providing a vegetarian option for a veggie, its so much more specific. However, as much as I understand, it is hurtful when the dinner invitations suddenly disappear. But who could blame them?
Going to cinema and finding munchies I will eat, popping out for coffee and cake, lets meet up for lunch, private view at the museum with buffet and drinks, fundraising evening with a meal, awards ceremony with a set dinner, why don't you stay for dinner, etc etc. Don't even get me started on going on a date! There are so many problematic occasions!! I have to plan my day around my food which even my friends don't understand. Its because it is so hard finding something I will eat when I am out and about. If its a friend who knows about my SED I will ask outright if they have something I can have for lunch or whether I should eat before I arrive. It is odd, but I hope they understand its because food is such a difficult subject for me. Even when people know I have SED I can find it awkward eating around them, particularly if they have tried so hard to fit in with all my issues and I still can't eat it. Sometimes my brain just won't allow it, and that is very hard to explain to people.
Most of all its hard because the last thing you want to do it draw attention to it, and yet so often you become the friend with the eating problems. It dictates what you can and can't do, and sadly what you do and do not get invited too. Friends get fed up with making allowances for you, or they suddenly seem to forget you have eating problems and expect you to eat a salad or something. Or worse of all they start commenting on what you eat, and how unhealthy it is and start making suggestions on what you should be eating. Yeah, thanks that helps! My SED does not make me, me. There is so much more to me, yet I can totally understand why that 13 year old girl kept herself to herself. Its easier than coming up with an excuse for why you are not eating or having to explain what SED is. How do you explain a fear of food? How can you explain that to someone and not expect to see them smirk and look at you with an incredulous look on their face? "Really, your scared of food? Oh no, here comes some broccoli, run"! Or some other unfunny joke.
The silly thing is that actually when a SED sufferer feels more confident and accepting of their situation the more likely they are to try new foods and seek out professional help with their condition. Being happy and positive can have a significant impact on the success rate of trying new foods, and maintaining a good diet. I know from personal experience that when I am unhappy or stressed my eating goes out the window. I lose my limited appetite completely and live on sandwiches and snacks. So really if the community centre woman does really want to help the young girl, the best thing she can do is to help her accept herself and become more confident and to encourage her peers to accept peoples differences as we are not all the same, and with a bit of luck the girl will become more confident and hopefully will start to expand her safe foods. At the very least she might try her hand at a bit of baking!
