This blog post is another that was inspired by a reader who wrote to me. We had a series of in depth email exchanges and I wanted to use her story as an example of the challenges that face adult sufferers of anorexia. More importantly, what we need to do in order to best serve these people.
Ann, (not her real name) contacted me after reading my book. She thanked me for writing something that made her feel less isolated — neither she nor I had onset of Anorexia in childhood. We were both adult sufferers with adult-age onset, but Ann had spent the vast majority of her adult life without Anorexia, whereas I had an onset age of 17 and spent ten years after that heavily affected.
Ann is currently 62 years old and in recovery — but struggling due to isolation and a lack of ongoing treatment provision.
Ann’s Story:
When I asked Ann what age she thought that she was when her eating disorder began she has trouble remembering exactly:
“I believe my attitude to food during my childhood , teenage years & throughout the 13 years of my marriage was normal …” however she marks 2011 as the year when IBS caused her to have some food intolerance tests done — York Intolerance Tests.
Previous to this, in 1999, Ann had an intolerance test Asyra Pro Bio Energetic Screening that was done at her local health shop. She says it was after this that she went “big” into healthy eating and started to cut out fat. So by the time that she took that York test, she was already far too thin.
Interestingly, Ann didn’t have IBS prior to 1999 — so no IBS before she started to cut calories.
Over the course of two years she had three tests done. These tests told her to avoid certain foods amongst which were: eggs, milk, yeast, salmon, corn, seeds, tuna, almonds, millet, nuts, and grapes. As you can imagine after this amount of restriction Ann lost even more weight, and we think that her ED was triggered in this time.
Her IBS, by the way, only got worse when she cut all these foods out of her diet. When she presented herself after being on a restricted diet with no improvement to her IBS, her doctor went on to suggest that she also reduce carbohydrates. At the time that she was told to do this, Ann had already lost a LOT of weight. My first question here is why a doctor presented with a woman who has lost a drastic amount of weight would not think to explore an eating disorder potential at all, and would instead prescribe further food restriction?
Things had to get a lot worse before treatment was prescribed
Ann continued to lose weight, her IBS continued to get worse, and in the end she was referred to an ED service and a therapist. CBT was used and this helped her get her weight back into a safer place. Her treatment plan and therapist saw her through weight gain, but as usual, after reaching a minimum weight she was abandoned. Well, she has a review in December.
December! That’s months away, and it doesn’t take months to get into a serious state of relapse. I hope that Ann can find some support in the meantime to help her through.
The long term effects of Anorexia for Ann have been osteoporosis and peripheral neuropathy. Without CBT, Ann is struggling not to relapse, and she lives in a remote area in the UK where she has no close family. She has some close friends and a couple of them know about her eating disorder, but she says that only one of her friends will acknowledge it. That friend, unfortunately feels out of her depth in helping Ann which is unsurprising considering just how complicated EDs are. Ann actually gave her a copy of my book in the hope that reading it would help her to understand better. (This really meant a lot to me and it is hard to describe the emotion but rather like relief of all things — relief that my book has been used to help someone I think.)
I’ve never thought that food restriction is the answer to food intolerances and I think food intolerances themselves are massively over diagnosed. In Ann’s case the IBS didn’t change, but restricting foods resulted in her developing a sever eating disorder. Incidentally, now that she is eating more calories and fat and not restricting any foods like the intolerance tests told her to, her IBS has improved.
CBT can be very effective for treating Anorexia in adults, but it’s not a one-stop cure!
The biggest point here is the treatment. It worked, right? The CBT worked. However, once again we are seeing someone thrown out the door as soon as they are not considered a critical risk. Relapse risk is SO high with eating disorders — we know this — so why does this continue to happen to people of all ages? We have to do better to ensure that sufferers are treated long after they reach weight restoration.
Lastly, we need more resources for adult sufferers. Especially those whose generation are even further removed from understanding what illnesses such as Anorexia really are.
Wishing you the best Ann! I am so happy to have connected with you.
Hello
Thanks for this post. Like Ann, I developed AN as an adult and like Ann, I started out with a healthy obsession of food and cutting out ( at times) what I believed to be either calorific or so called intolerance reactions. But I think the reason for my food focus was not through the testing but for an unhappiness that came from being mixed up in a whole number of things such as lack of real close friendships or work struggles along with a sense of loneliness. I also had a miscarriage and a few weeks later list my dad. My weight had been dropping girl a while too snd I was not having periods. In fact, I’d not had them for years and with taking the pill, I really couldn’t tell how long my weight glad probably affected this. So, with all this, I think the inset developed gradually and hut when my weight plummeted to a level whereby I found functioning everyday difficult. As an adult sufferer though, the problems also lie with accepting treatment especially if you do have a job or family or people to care for. The ED becomes something you can keep going alongside you as a comfort almost or it becomes secondary to the other things you either need to look after or want to. I did have a child through treatment snd did manage to gain weight for the pregnancy to be ok, but I went straight back into restriction, chose to. My choice. So treatment for adults us complex but absolutely so necessary. There are do many things to consider snd help with. I am now, especially after reading your book, bring helped through this snd seeing food as an ally. I am in the weight gain phase, still finding things hard but trying snd eating more if my fear foods. I have a long way to go and I still know I have days where I don’t always have what I should. But I know I can do this. Your book has helped but adults aren’t getting the right help. We need to push for more help and knowledge of the importance of ED in adults.
Hi Adult Anon,
I agree, so much more is needed. I think I will be trying to think of ways in which I can turn my advocacy focus more on adult sufferers this next year.
I developed anorexia in my 14, after my inpatient treatment I stayed in qasi recovery for years. But I thought I was recovered. I developed serious gut issues and doctors werent able to help me. So I looked for alternative treatment.. Chinese medicine, ayurveda and finally fubctional medicine. The provider of functional medicine diagnosed me with leaky gut and many mamy food intolerances and prescribed very low carb “antiinflamatory” diet.. and whole bunch of super expensive supplements. In one year I spent more than 600 euros for them. And I became obssesed with food like I had never been before. Actually scared of every little carb contet. My digestion after first better period was the worst. My anxiety was the worst and I developed insomnia. I ended up in inpatient treatment.. And took my more than 2 years to found my trust to food again…
After listening to your recent podcast and writing a reply about how useful it was, it made me think about the way EDs are perceived, diagnosed and treated. It reminded me of the time, a few years ago, when I tried to get help for anxiety ( I hadn’t really accepted AN properly) but when it came up as an issue with the IAPT team in Sheffield, they told me my weight wasn’t ‘low enough’ for Sheffield determiners (despite being lower than the 18.5 bmi) to get the proper help I needed. A year later, not trying but from getting worse naturally, I was successfully diagnosed with an eating disorder but still unable to access help due to lack of resources.
This has prompted me to respond because it made me think yet again that adults can hide their disorder more easily than teenagers. Through work, childcare, denial or simply not being aware, the disorder can lay dormant, continue to grow or just be maintained over years. But equally, many can be in the ‘normal’ bmi range too and have the disorder. The thoughts can be there and the behaviours too. But we can keep them going as comfort or because it’s harder to actually face up to dealing with it. It’s complicated and it can be something that is there even without properly realising it. But they can’t just be categorised in neat boxes. I know mine developed over a long period before becoming full blown. We need to be looking at the roots to these developing or bring treated without stigma in adult life. We need more resources to be coping with them on a daily basis. Help is so important but I feel like I’ve had to really research and fine tune things for myself and I’m still trying. I’ve gained knowledge but I’ve also learned things about how others see it. Even good friends can want to tick off how I sm if I say I’m feeling positive. Oh, glad you’re feeling better! But I’m not. I might be okay this time today but not necessarily at lunch or in the evening. But explaining the complications is hard.
Adult onset could be prevented if maybe earlier treatment was successful. But one thing is certain. Adult knowledge snd treatment are in need of a realistic and proper discussion in an open forum so people can learn, diagnose and help in a productive and thorough way whether they fit the bmi number range or not. The illness is more than a range. Authorities might need their factors to help but they mustn’t use just bmi. We’ve moved in so much but unless we can move on more, higher numbers of adults are going to keep suffering.
You are so right! There is so much more that could be done in the diagnosis stage for adults and most of that comes with recognition in the first place by treatment professionals. I have heard so many stories of adults being refused treatment because they are not thing enough!
Do we refuse cancer diagnosed people treatment if they are not far enough along the stages? No!
The earlier treatment is given the less the disease progresses.
Hi Tabitha,
Thank you for this blog!
I recently went to the doctor for a blood test, to see how everything is going, since I am really working on my recovery. I eat the food I want, I gained weight, I eat a lot more. But whats really weird is that now I have a high cholesterol… My doctor advised me to watch out for some sort of fats. But that’s making me confused right know… Because, does that mean I have to watch my food again..?
Have you ever heard from people in recovery that they have this? And can you give me some advise?