Sorry this is long but I wonder if anyone could help me?
I used the words eating disorder in my title as I don't really know what the hell it is but over the years I am getting worse and have been getting nowhere with the NHS. I simply can not afford private help so am now seemingly forever in a constant loop of frustration.
I am 51. WhenI was a child of approx. 7/8 I developed a fear of eating. I was absolutely convinced that my food was being poisoned (not sure I believed anyone in particular was doing this but I know it stemmed from a tv drama show I was allowed to watch in which a man tried to kill off his wife by injecting a box of chocolates with arsenic or similar and gifting it to her. Around this time I convinced myself my food was contaminated/poisoned and I would cut bits off from the 'offending' foods and pop them under my plate (mum said there would be a ring of uneaten food when she lifted the plate at the end of dinner), I would then cautiously nibble on the bits I deemed safe enough to consume. I would also believe my saliva to be contaminated so would just randomly spit on the floor in our house and into the sleeves of my clothes, they were always sodden!
I don't recall how long this actually went on for or what my parents would say to me at the time but they have talked about it since I have been an adult. However, I have a history of anxiety, ocd and unusual behaviours and it wasn't a one off incident so just something they put up with as I've always been 'highly strung' according to them.
Following this issue I probably went back to some kind of eating normally although I can not 1005 say if that's true as as far as I can remember food has been a bit of an issue for me. I can not say that food has been something I enjoy at all. I have always been wary of it and fully aware of food poisoning and the potential for foods to cause illness, even death. I am very fussy about food, food dates, will throw food away even if its nearing the use by date. If there is any food contamination stories in the news that food come soff the menu for me (ie recent lettuce and ecoli outbreak). I have always eaten to survive and nothing more.
My teens and early 20's were mainly uneventful until I was 25 when I developed IBS out of the blue, it just hit me one day in 1998 and it has never gone away. I have had good times and very bad times with it. Over the years, I have had endless gastroenterology tests and seen several dieticians and been on various diets and cut out various trigger foods etc. I was put on the low fodmap diet around 10 years ago and in retrospect with my past history with food this was a huge mistake as I am now stuck on the elimination side of the diet which is totally unsuitable for a healthy balanced diet. I have since discovered the low fodmap diet should not be advised to anyone with any kind of eating disorder.
That is the problem because for many years now, and its getting worse, I have a huge issue with food. I hate it. In my mind's eye its the instigator to all my gut issues, when I eat it starts a whole series of issues, I feel nauseated, my guts start growling/churning/gurgling, I belch loads and as I appear to have a very strong gastro-colic reflex I often need to go to the loo very soon after eating. Often when I eat (as in breakfast this morning) I feel so nauseous after that I wish I had never put food in to my mouth. I have become very very choosy when deciding what to eat and the moment I perceive a food to have made my tummy feel bad it is straight off the menu to the point that I probably will never eat it again. I now only consume around 12 different foods that I may eat regularly. This lack of diversity has no doubt negatively impacted my gut microbiome as I have now developed gut dysbiosis and SIBO which is greatly exacerbating the whole vicious cycle and is so very difficult to treat. I so very much wish I could be like my friends, they enjoy their food and drink so much to the point many are thinking about their next meal before they've finished the last, I can only but dream of having that kind of relationship with food.
I have invested heavily both financially and emotionally to try to 'cure' myself of these issues but to no avail. I can no longer afford to see anyone privately as I have had to reduce my working hours due to the gut issues.
I am a patient of a London based NHS hospital under their neuro-gastro appointment but tbh they've not been overly helpful. I have been their patient for the last 2 years and have only had a handful of appointments so far. The dietician just advised me to eat as many different foods as I can but in small quantities (I am trying but it is so bloody difficult) and says I most probably have ARFID but now only wants to see me yearly now and I am currently on a year long wait for some acceptance therapy but I have had so many appointments cancelled for this. Should have been May this year but it has been moved to the end of August so fingers crossed I will actually get to speak with someone this time.
Has anyone had any experience of anything like this? is there anything anyone could suggest that I try to help?
As I say, over the years I have tried so much, CBT, counselling, EMDR, Hypnotherapy, Mindfulness, Meditation. Seen private gastros, dieticians, nutritionits etc.
I have no money left for such things but wonder if any mental health meds could help (GP not to helpful tbh). I have tried Sertraline, Citalopram and Escitalopram but they all made the gut issues worse which obviously triggered more anxiety.