Anorexia & M.E (and other chronic illnesses)

I’ve struggled with M.E since 2014 and since around 2018 my M.E has been classed by my doctor as severe. I’m mostly housebound and I spend most of my day here in bed. I can go out such as for therapy appointments, medical appointments or to my Dad’s for tea but leaving the house takes me days to recover from doing so. Even just the exertion of getting washed and dressed in the morning tires me out and I’m left with Post-Exertion Malaise by the end of the afternoon and I’m exhausted for the remainder of the day.

I’ve had anorexia just over a year. It’ not something that is new to me as for a number of years as a teenager I had anorexia and was in and out of child and adolescent inpatient units and eating disorder units as well as the paediatric ward because I was too physically unwell to be in a mental health unit. I didn’t find inpatient treatment helped me that much. It did get me out and away from my school and home life which helped but I received very little psychological therapy, so I could never cope with being a restored weight so I’d instantly relapse. What helped me recover was my mother leaving the family home - there was a great social worker in the last inpatient unit I was in who really listened to me, something I’d never experienced. Once I was back home with my Dad and in outpatient treatment I had an amazing psychotherapist in CAMHS (Child and Adolescent Mental Health Services) who I honestly feel saved my life. I still needed therapy but I aged out of CAMHS and my therapist just hoped I could keep going especially because I couldn’t continue therapy as adult mental health services didn’t really have a talking therapy service. Occasionally I think about tracking that therapist down just to let her know that I’m still here.

Anyway I managed to learn to be the one in control and though remnants of my eating disorder still remained I managed to be the one in control. However last year life events in my life meant that I needed to feel in control of something so I turned to my old habit of controlling food. At first I thought I was in control but after a while I realised my eating disorder was controlling me and I reached out for help. My head is still a bit all-over the place and I’m still struggling with my anorexia and I’m finding recovery hard  so writing this post with my sensible brain typing is a little hard.

Having anorexia and M.E is a really difficult combination in so many ways. The main things and I often discuss this with my therapist is that due to restriction with my anorexia it causes brain fog and fatigue as well as other health problems. I’ve been needing regular health checks as well as needing a Dexa scan to check my bones. All these appointments for these tests are exhausting and the tests themselves and the time they take are exhausting. Then I have my therapy sessions. Like I said above going out is difficult for me so all these extra appointments add to my exhaustion and Post-Exertion Malaise, PEM, with my M.E and with PEM I get an exacerbation of my M.E. Alongside my anorexia with M.E I also struggle with brain fog, fatigue and other symptoms so I get a double hit of brain fog and fatigue. My anorexia also worsens my M.E too.

I know rationally and sensibly that I need nutrition to help my M.E and to help reduce my brain fog and fatigue and improve my sleep and just overall health and my other chronic illnesses too but it’s incredibly hard and easier said than done.

Anorexia is a mental illness. It’s a voice that tells me to restrict, it distorts my perception of my reflection in the mirror and tells me that I am fat and I need to lose weight, that I am not deserving of nutrition, that I am worthless and it feeds into my negative cPTSD trauma feelings about myself. I see my eating disorder as almost a form of self-harm against myself.

I can’t just pick up a fork and eat a meal to fuel my body’s daily quota of nutrition. Even just something like a yogurt makes me feel guilty and sets off the voice in my head with criticism and negativity.

My M.E needs nutrition to function better, especially at the moment as my M.E declined 7 months ago due to the situation I was in with my care. Frustrations over the lack of control with my health and care only made my eating disorder worse; this obviously wasn’t helping my worsening physical health.

On a positive note I have come a long way since I first started my eating disorder therapy, I still have a way to go. Recovery isn’t liner. I’m just finding it hard to balance my struggle with anorexia and knowing that my M.E needs nutrition so I can function better. It’s really difficult sometimes especially when I’m having a bad M.E day. I know I need to follow my meal plan which will help my M.E, but implementing it is a challenge.

I’m also finding it hard at the moment because I’m trying to have as much nutrition as I can handle, I know realistically it’s still not enough and I’m still not there with my recovery. Me and my therapist have been keeping things stable as I emotionally can’t handle increasing anything as I’m struggling with how things are at the moment. I’m trying my hardest and I’m dealing with a lot of eating disorder thoughts around feeling guilty and bad. I’m finding it discouraging because I’m trying my best but my energy levels are still low. It makes me feel like what’s the point in putting myself through so much upset and struggle. It’s a difficult balance between my M.E and the anorexia; I just have to take each meal at a time.

I think having a restrictive eating disorder like anorexia and and Energy Limiting Illness like M.E, or even my Ehlers-Danlos which also limits my energy is really difficult because you’re trying to balance the needs of you’re physical health condition which includes giving yourself nutrition which gives your body energy to function. Then on the flip-side you’re battling a mental illness which restricts your nutrition and exacerbates symptoms like fatigue and brain fog as well as causing physical health concerns. Having POTS as well doesn’t go well with an eating disorder.

Another problem with M.E and anorexia is sleep. Sleep problems aren’t uncommon in M.E. I really struggle with insomnia especially and I know that I need energy to sleep and lacking energy from a lack of nutrition won’t help my sleep problems.

One of the main  reasons why I wrote this post was because I found it really hard to find information on anorexia when you also have a chronic illness. I’m sure I’m not the only person out there who has both chronic health problems and and eating disorder. I wanted to write about how they affect each other and the difficultly of having anorexia and M.E and other chronic illnesses.

My journey with anorexia

Eating disorder recovery symbol

* TW: Eating disorders and self harm*

Back when I was a teenager I really struggled with a lot of things. Home was difficult due to my mum’s BPD. School wasn’t great either. I was bullied in both primary and secondary school. I never felt like I fitted in anywhere, especially with my peers. I’d try to change myself to fit in but I felt awkward. I preferred the company of adults like the dinner ladies on duty in the playground or teachers. In primary school I’d much rather spend my break and lunch periods in the classroom tidying the classroom and doing jobs for my teacher. 

The move to secondary school I found really unsettling. This quickly brought on feelings of anxiety and depression; I was already deliberately hurting myself in different ways. I struggled to cope with the change of teachers and classrooms. I also found the playground dynamics difficult too. I’d gone from enjoying playing double Dutch skipping in the playground at primary school to just everyone using the playground to stand around in their cliques in. I struggled even more to try and fit in and to change myself as I moved around groups.

More often than not though I was bullied than being friends with people; if it wasn’t one person or group of people bullying me physically and/or verbally it would be another person or group. 

I took to spending my breaks and lunch periods in either the library or my favourite teacher’s classroom. 

I’d always avoided the canteen from day one as I found it too small for purpose and it was noisy and overwhelming. Not eating meant I could spend my whole lunch period in the library of my music teacher’s classroom. 

My only refuge at secondary school from feeling overwhelmed and anxious was to spend time in SEN unit doing worksheets so I didn’t have to be in the main school building. It saved me the stress and panic and worry of changing classrooms and teachers as well as being away from all the bullies.

Very soon my eating disorder took hold. It quickly went from skipping lunch at school to not wanting to eat at home too. I very soon became a vegetarian as it was something I could cut out of my diet. (I’m still a vegetarian now and always will be but I do it for the animals now.) 

Eating disorders are very manipulative. I remember my dad saying he’ll take me to the GP and I bargained with him that if I eat my packed lunch we won’t go. I made it look like I had so voilà no GP. However I annually saw my paediatrician for my spinal curvature and I got on well with him. I remember telling him how dark I felt and we spoke about my eating. My paediatrician diagnosed clinical depression and anorexia.

Very quickly treatment changed. I had to start seeing a dietitian who had zero clue about eating disorders and she was expecting me to do the impossible. I also had to see my paediatrician twice a week. That just lead to me spiralling even deeper. Eventually in October time I self-harmed by taking a small overdose. This fast tracked me to CAMHS: Child and Adolescent Mental Health Services. I started psychotherapy sessions with the CAMHS therapist that assessed me in hospital; she came to play a key role in my journey. Unfortunately I was in too deep with my eating disorder and depression and a couple of months later I was admitted to my first inpatient unit.

Going into hospital almost saved me in a weird way. I hated inpatient treatment but that first admission got me away from everything that was bothering me school and home.

I spent the next several years in various inpatient units. I restored my weight each time but it didn’t work on me emotionally. I think the problem was the lack of talking therapies. I’d get discharged but I’d quickly relapse and be admitted to another unit. I think what worked for me was in my last unit there was a social worker in that unit and I talked to her about home and basically my mum left and that really helped me. I was able to stay at home and what helped me to recover was my CAMHS therapist. I was in therapy with her for several years and slowly I opened up to her. I honestly think I owe my life to her and I will never forget her.

I relapsed with my anorexia again last year. I think the trigger this time was not feeling in control of my health and care maybe? I actually asked for help this time. I was assessed and then offered outpatient therapy. 

There were times earlier when I struggled with outpatient therapy and did want to consider inpatient treatment again but equally I really wanted to try and stay in my own home especially as I now have my own home. I’m still in outpatient therapy. It’s tough going and it’s often a real struggle but my therapist (who I get on well with thankfully), with has made a lot of suggestions to help me at home.

The therapy I’m doing at the moment is CBT-ED so it’s CBT specifically designed for eating disorders. I find my therapist challenges my thinking a lot or will get me explain something I say. I’ve also been shown a lot of resources some are general information to learn about various aspects of eating disorders then some resources my therapist gave me were aimed at specific things I struggle with as part of my eating disorder. I’ve found the education really helpful partly because I like to know and learn things but also it helps me understand my eating disorder. I really struggle with my body image but that topic isn’t worked upon until my weight is restored, something I’m making slow progress with and struggling with as well. 

Recovery takes time but equally recovery is possible.

Beat

Information and resources

Helpline - telephone, email, 1:1 web chat 

It never gets easier... Eating disorders and what needs to change

Fact: eating disorders have the highest mortality rate of any mental illness

As a teenager I was very unwell entrenched in an inner battle with anorexia. I spent time in several inpatient stays. What saved me was psychotherapy though my eating disorder is still something that stays with me to this day.

On Sunday I heard of another person I knew closely from one of the inpatient units I was in who had passed away. 

I now now 6 people who have passed away from eating disorders, some have passed away from the illnesses itself others have ended their own life. Some where still very much unwell when they passed away others where well but had lasting damage to the body. Even my body has taken a toll from my own eating disorder.

Every time I hear of another life sadly lost it still hits me hard and never gets easier. At 28 I feel too young to know too many young lives taken too soon.

I still feel that more needs to be done to prevent these tragedies. Still far too often early intervention isn't happening; something I've been part of campaigning for for a lot time. More awareness is also greatly needed in places like schools and by primary care professionals such as GP's to aid early intervention and to support people like GP's to manage those who first start to show signs of developing an eating disorder. Also, something I felt was also missing was the care, or lack of, when I was discharged. I was seen by mental health services but they weren't specialists in eating disorders.

There needs to be better access to specialist eating disorder services - I know from personal experience that even when there is a specialist eating disorder service it is hard to get help from them. Often their main acceptance criteria is your BMI which is totally wrong. If you've been discharged from an impatient unit but need ongoing support post discharge your BMI will be within the normal range as well those who are in the early stages of developing an eating disorder will also have a normal BMI and for some types of eating disorders their BMI will remain within the normal range. So BMI shouldn't be used as an admittance criteria for help and support from an eating disorder service.

Goodbye Hayley

I also feel that the media need to be more responsible and thoughtful of how they approach the subject of eating disorders. There are many things that I find unhelpful when I read media reports around eating disorders and I can speak from personal experience when working with the media myself to help raise awareness of eating disorders. Awareness and facts about eating disorders need to be the focus; not a person's weight or a photograph of them when they were quite unwell.

Finally I just want to end this post in memory of Hayley and everyone else who is no long here. Hopefully the inquest for Hayley will help bring improvements for those with eating disorder and something will come from her loss.

Public Health, Not Public Shaming - A Campaign by Beat

Beat is the UK's leading charity that supports those with eating disorders and those that support them such as family and friends as well as professionals.

Beat's new campaign 'Public Health, Not Public Shaming' is around the new governments announcement in a plan to encourage weight loss. Now whilst this is a good thing to help get the public more healthy and making better decisions about their health which will improve health and wellbeing. It will also in turn ease the strain unhealthy lifestyles have on the NHS.

The new measures laid out by the government include introducing a weight loss app and also increasing the publication of calorie labelling in places such as cafés, restaurants and takeaways and fast-food outlets. Whilst this is good, what I feel is missing is the public education of what is a "healthy" amount of calories to consume when browsing the menu - a bit like how the traffic light system works on food labels with green being a healthy amount of calories and red being a high amount of calories in that portion so people will understand and consider consumption of that particular food item.

What I also feel is also missing is the consideration of the many people in UK who are living with and trying to remain in recovery from an eating disorder.

I've written here on my blog before about my own experience of anorexia and now even though I am in a well state of recovery from my eating disorder even I can struggle at times. Eating out can still be a stressful situation for me and faced with the numbers [calories] on the menu it may possibly leave me feeling rather flustered when choosing what to eat.

Now I'm in a much better place to manage my eating disorder but if I where to take myself back 10 years I found eating publicly challenging enough without being faced by calories on the menu even when looking at my list of safe go-to foods and knowing that there where apps for weight loss defiantly would trigger my spiral downwards aiding my anorexia.

Previous Government anti-obesity campaigns have been ineffective in reducing obesity. However they have increased stigma, and have put those vulnerable to developing an eating disorder or those currently experiencing an eating disorder at risk. 
As one eating disorder sufferer highlighted: “My eating disorder makes me, and many others, susceptible to taking these messages to the extreme.” 
Beat recognises the importance of reducing obesity, but it is vital that the public are not shamed into losing weight in an attempt to solve this problem.. - Beat

Update

Since starting to write this blog post there has been n update from Beat in regards to the Public Health England's planned weight loss app.

"Public Health England have now taken steps to update the app to help ensure that people with eating disorders and people who may be vulnerable to eating disorders do not use the app." - Beat

The flaws with the app are still that those under 18 and those underweight could still use the app and knowing from my own experience of having anorexia you become a great deceiver and when there is a will there is a way. So on the app you could possibly falsify your age or BMI/weight to still be able to use the app and even if you are stopped from using that app there are probably many other apps that can be used in its place.

Help for Eating Disorders

If you or someone you care about are concerned bout eating disorders, (and remember you don't have to be underweight to struggle with one) you can always initially speak with your GP or contact Beat.and look at their resources on ther website to better understand eating disorders, the different types of eating disorders and spotting the signs that someone my have an eating disorder. Beat's website can be found here.

Beat also have a helpline

📞 Helpline - 0808 801 0677

📞 Studentline - 0808 801 0811

📞 Youthline - 0808 801 0711

The helplines are open every day of the year 

9am - 8pm during the week 

4pm -8pm at the weekend and on bank holidays

→ Calls to this helpline are free from landlines and mobile phones within the UK and do not appear on itemised bills

There is also a 1:1 web chat if you are unable to get through on the phone.

Alternatively you can email:

Adult support email inc concerned adults/parents or professionals e.g. school staff

• help@beateatingdisorders.org.uk 

Student line

• studentline@beateatingdisorders.org.uk

Under 18's Youthline

• fyp@beateatingdisorders.org.uk 

Body Gossip: 'This one is for you' video

This beautiful video by Body Gossip has been around for a while but I still love it and though during EDAW would be a good time to share it. It's a poetic film staring different famous faces and is about Eating Disorders and fighting back to claim a life recovered.

To find out more about Body Gossip's work click here.