Have you been able to overcome an eating disorder with help from the NHS?

[Picklingwalnuts]

I am 52 and for as long as I can remember, I have had issues with food.

Not sure what you would actually categorise it as though. I don't really have anorexia or bulimia (although I do very much enjoy being on the slimmer side as I have always been slim and would hate to gain weight). I feel that it is more of a disordered eating thing.

It started when I was around 7/8. I have always had mental health issues (lots of anxiety, ocd, phobias, panic attacks, strange thought processes etc). I am currently waiting for an ADHD assessment. I believe that I also have some autistic traits too.

So when I was around 7, I watched a TV drama where a man wanted to bump off his wife so he injected a box of chocolates with poison to give to her. From that time on I started to believe parts of my food were also poisoned and I would cut away the 'poisoned' part and hesitantly nibble away at the safe part. My mum would say when she lifted my plate, there would be a ring of pieces of food under the plate. From then on everyone said I ate like a sparrow.

I never received any help for this but it was the 70's/80's, child mental health issues were not discussed back then I suppose. I was always told I was an anxious and quirky child.

I must have overcome this issue to some degree as I stopped believing my food was poisoned but I have never enjoyed food and would be quite happy to nibble small amounts all day or nothing at all.

When I was 25 I developed IBS and my digestive system has never been the same, in fact, throw in family stresses, perimenopause and caring for a parent with dementia my digestive system is currently the worse. it has ever been.

I have worked with endless dietitians and they all put me on the low fodmap diet. It never helped and for the last 10 years I have been 'stuck' on this diet which is not helping my gut issues at all and has brought to light my dormant relationship issues with food. I really do not enjoy food at all.

The problem is that I don't know what to do about this. I am mentally and emotionally stuck in this cycle. I have tried in the past but I have no money to throw at this and the NHS (GPs) seem very uninterested, I think maybe because it doesn't fall into any particular ED category and maybe they think that I have coped this far and should be ok. I am not ok though. I hate eating, have issues with many foods due to taste/texture/smell and for fear of triggering off more digestive issues. My dc are now late teens and we have probably visited a restaurant less than 10 times in their lives which makes me feel like a terrible parent. I do make sure that I eat with them at every dinner time and will chat, laugh and smile with them but inside I am not enjoying myself and feel quite panicky.

How do I ever overcome this? Could this be related to a neurodiverse issue? I can't afford to try anywhere privately and I am pretty sure the stretched NHS services would not be able to help.

I'm not an expert OP, but I'd look into EDNOS or ARFID, which is linked to neurodiversity. The BEAT eating disorders website is a good place to start:

www.beateatingdisorders.org.uk/

Your GP might be able to advise of any free counselling in your area, that might help. Or referral to Psychiatrist ( I had very helpful one for a while when referred as I was questioning my mental health/ND potential)

Had eating disorder in teens/20s then depression late 20s, on ADs ever since, recently realised I'm definitely ND, probably Autistic, have found reading lots about women with autism v helpful.

Yes, I have. I managed to get a GP referral to a mental health nurse and from there got referred to adult eating disorder services for CBT. I was surprised because I’d heard how stretched MH services are and because I was at the milder end of disordered eating, so I wouldn’t have been a priority candidate or anything. I’m immensely grateful to my therapist - I got my life back and managed to have a baby after my eating disorder had made my periods stop. I’d try the GP again if I were you. I hope you’re able to get the help you need x

From a formulation point of view it sounds like your OCD thinking style latched onto the poison thing and then the physiological effects of restricted eating were a feel good factor for emotional regulation and controlling anxiety, meaning that this became habitual and normal. (Although of course restricted eating makes emotions and anxiety worse, really, after the short term effect). If you are neuro diverse you may be particularly sensitive to internal proprioception, so then whenever you felt too full it would have felt uncomfortable and so it was hard to ever turn the dial back to normal eating.
If you can get a therapist who is familiar with working with EDs, maybe you could get them to support you in increasing the range, type and amount of foods you eat. What will be important is to see any discomfort as a necessary and transient part of the process, to tolerate way more fullness than you want to (the gut is a muscle and it gets weak when you undereat, it needs to eat more and regularly to work properly - sorry I don't know anything about IBS so you have that to factor in as well), to work through any feelings of fatness and body image or control or texture issues that come up.
I can't see you getting this help from NHS services I am afraid, it is not likely to hit thresholds for secondary care, yet at the same time it's quite specialised. I do think you could make a big impact on it yourself though, if you are determined to increase your range.