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@Mayz131
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May, 26 🙋🏼♀️ Lived with anorexia for far too long - she’s definitely outstayed her welcome. 😖 Muddling through recovery and life 🥲💪🌈Autistic & ADHD 🌈
London, England
Joined January 2013
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10 THINGS I WISH PROFESSIONALS WORKING IN EATING DISORDERS KNEW ABOUT AUTISM: A THREAD 🌈🌈🌈
1. We are not ‘treatment resistant’ or ‘non-compliant’, we just need a different approach to care and reasonable adjustments to be made to accommodate our neurodivergence. 🙏
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“Everyone’s a little bit autistic.”
Until autism makes you run away from overstimulating environments without saying goodbye to anyone.
Until autism makes you too exhausted/overwhelmed to go to social events.
Until autism makes you ‘impolite’ or even overtly rude sometimes.
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Until you ask for reasonable adjustments to make a school/workplace/healthcare environment more accessible to your needs.
Until you use sensory aids (e.g. ear defenders) that are more ‘obvious’.
Until you openly stim in public and people get ‘embarrassed’ to be near you.
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Until certain situations or tasks are manageable on one day, but not the next, so people accuse you of faking.
Until you have unconventional or ‘age-inappropriate’ special interests.
Until you have a meltdown or go non-verbal.
Until you actually unmask your autism.
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@adamfare1996
Autism and ADHD are disabilities! 🫣 Yes, one could argue they are ‘only’ disabling because of the environment we live in, which is not ‘made for’ neurodivergent folk, but to be honest, I am sure I would still struggle with certain things even if the world was more accomodating.
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When I was diagnosed with autism in 2020, I thought that would mark an end to being punished by healthcare professionals for having meltdowns. I thought it would be the last time I was dismissed as being ‘hysterical’ or ‘attention-seeking’ for seeking help for my physical health.
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ALL staff in the NHS from cleaners to consultant surgeons are heroes and do a vitally important job for our health service. However, the fact that Agenda for Change thinks that an administrator should be paid the same as a staff nurse in charge of a ward (Band 5) is mind-blowing.
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A friend of mine is currently inpatient in an acute mental health ward and this
#BMIchart
is displayed in the main corridor, in full view of patients, some of whom (including my friend) have
#eatingdisorders
. How is this okay? 😣
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3. It can be extremely difficult sometimes to distinguish between what is a harmful/eating disordered behaviour (to be discouraged) and what is an autistic trait (to be accepted): gathering a collateral history from family about early life/childhood eating can be invaluable. 👶
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4. Be mindful of sensory processing disorder: both hypersensitivity and hyposensitivity for all 5 senses! Music from a radio in the dining room can be overwhelming, whereas adding ‘too much’ salt to food could actually be making it palatable. Don’t assume it is the ED! ✋👅👃👁️👂
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2. When a patient is extremely malnourished (not just in terms of weight/BMI but the whole picture), the priority should be getting the nutrition in, no matter what, and working with them to make achievable steps in the right direction: the what/when/where/how can come later! 🍽️
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5. Autism can make treatment more difficult as we often become ‘stuck’ in the routines and repetitive behaviours of our ED. However, autism can also be a massive strength, given the right treatment, as we can stick to our mealplan and ‘stubbornly’ persist towards recovery. 💜
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However, despite having not really needed to seek care for my physical or mental health until until late 2022, I am now in a position where I an being denied access to care because of a previous diagnosis of EUPD (in 2018), which was later revoked.
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6. If you say something is going to happen, at a particular time on a particular day, PLEASE actually stick to that plan. Emergencies and uncontrollable events happen, but please tell us as soon as possible if there are any unexpected changes in order to reduce our anxiety. 🗓️
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6 years later, I am still living under the shadow of this erroneous label, even though it was never formally assessed and put on my notes following a 10-minute questionnaire with a mental health NURSE. 🤦♀️ I have since had 3 psychiatrists assess me as NOT having
#EUPD
.
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10. Last but not least, please listen to the stories of those with
#livedexperience
of autism and eating disorders. Please ensure your research methods and forums are inclusive and accommodate for the needs of autistic people, so that a wide range of diverse voices are heard.🌈🙏
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8. Please be mindful around times of transition. Whether that be smaller transitions (e.g. therapy session ending) or massive ones (e.g. being discharged from hospital), we may ‘regress’ in our ED due to heightened anxiety about change and need more support during these times.🤝
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Can we normalise always eating something rather than nothing? 😪 Food having to be ‘perfect’ and nutritionally balanced every time is making my decisions around food so complicated and exhausting and I just can’t be bothered anymore. 🥲
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9. Where social anxiety and communication differences are concerned, group therapy should not be the only option offered for those with
#bulimianervosa
or
#bingeeatingdisorder
, despite what the NICE guidelines say. It should be a no-brainer, but sadly isn’t always accommodated.👩👩👧👦
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I have had my appointments at the
#eatingdisorders
service ‘rationed’ because they are adamant that I’ve become ‘too attached’ to their care. They mistook the distress I experienced challenging my
#anorexia
during day patient as ‘deliberately getting worse to stay in treatment.
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My ability to self-advocate for my health and my needs, instead of being seen as a strength, is being viewed as ‘problematic’, as a barrier to treatment and an additional ‘symptom’ of this historic
#EUPD
label. I am now seen as a problem as opposed to a patient or a person.
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TW suicide
Hearing of a young woman in the Netherlands with
#autism
and
#BPD
who has scheduled a date for legal
#euthanasia
made me so upset and devastated with the world. 😔 People would rather not carry on living than live with this amount of distress every day. 😣
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I was given a one month ‘break’ from therapy, because I could not make progress in MANTRA at the pace required. Again I was accused of getting worse so that I can get the ‘care’ and ‘attention’ from healthcare professionals that I crave.
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I am therefore asking everyone to read my story and share this thread far and wide, so that whatever happens to me, I will know it was not in vain if it helped at least one other person. If anyone knows how I can be freed from this impossible situation, please do get in touch.🙏
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Pouring money into the NHS won’t help if you continue to employ shitty people with zero compassion. Yes funding and staffing is needed, but no amount of resources can teach people empathy and how not to be an arsehole. 😣
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Hear me out: deliberately withholding information about upcoming appointments to an autistic person is discrimination. Deliberately saying their ‘trigger words’ for meltdowns is barbaric. Insisting on eye contact or shouting at them for being non-verbal is ableist and disgusting.
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However, since the medical team here have communicated with my ED team, my medical care has been slowly but stealthily withdrawn. I have had to fight for the right to basic human needs (e.g. sleep) and the doctors and nurses are no longer communicating with me their rationale.
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(TW) Having got into a dangerous position with my anorexia, having not eaten for 5 days, I presented to A&E last Sunday concerned for my physical health. The psychiatric liaison nurse threatened me with sectioning if I was not weighed in the department and wrote to my ED team.
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I am now in a general hospital as a medical admission for refeeding. Originally the plan was laid out to me clearly and I was given autonomy in the decision-making processes concerning my care. My opinions and concerns were taken seriously and I felt empowered.
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During my appointment on Tuesday, I was told to ‘just eat a snack’ and be discharged to a CMHT to have a ‘chat once a week’ with a care-co. Although I acknowledge their idea that my issues go ‘deeper than JUST anorexia’ (i.e. cPTSD, autism), my ED is the main concern currently.
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I am terrified of staying on this ward, in an overstimulating environment which brings out the worst in me and triggers my anxiety surrounding trauma. However, I am not currently physically stable enough to be discharged home, without medical personnel at least in the building.
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I will therefore be asking tomorrow to be urgently transferred to an autism-informed eating disorder treatment setting, as my final request before I fear I will lose capacity (either by a mental health act or becoming too physically unwell to communicate my wishes).
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An acute mental health/general psychiatric ward would be a death sentence for me, since these environments further escalate my anxieties, trigger autistic meltdowns and I am unable to take in any nutrition or hydration when I am in a state of emotional distress/overwhelm.
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My options are now: a) continue to rapidly deteriorate physically on this ward and end up dropping to a BMI deemed ‘acceptable’ by an
#eatingdisordersunit
and be transferred or b) end up having another episode of syncope or sudden cardiovascular collapse which ends my life.
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Cancelled going on a group hike today because I realised I can’t handle massive groups without feeling overwhelmed. 😔 Not one person from last month’s walk has reached out to me or spoken to me and I just can’t hack being alone amongst so many people anymore. 😣 Hate myself.
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My ED team are currently unable/unwilling to accept me into any of their day patient/inpatient treatment pathways as I am, allegedly, ‘too problematic’ because I had an autistic meltdown during day patient when routines were changed abruptly.
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BREAKING NEWS: Apparently eating disorders ‘are NOT a mental health issue’ according to the psychiatric liaison team. 🤦♀️ Quick everyone!!! Remove that whole chapter from the DSM V!!! 🤯🚨🚓👮
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In ED recovery, why is it called ‘extreme hunger’ if you are underweight, but ‘bingeing’ or even ‘excessive’ if you are a healthy weight/overweight (according to BMI)? 🙄 Interesting how both are healing from a restrictive ED, but one is celebrated and the other is discouraged.🤐
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Just unearthed this document from
@NHS_ELFT
stating that nurses and psychologists can make a formal diagnosis of
#EUPD
, as well as psychiatrists, as long as 5 of these 10 criteria are met. Half the population will now have a
#personalitydisorder
🤦♀️
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I’m gonna say it. If you work with people with
#eatingdisorders
and want to collaborate with people with ‘lived experience’ then don’t discriminate against those with ‘living experience’ (i.e those still struggling) or those who’ve not had 100% positive experiences with services.
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UPDATE: Still in A&E majors waiting for a bed. However, today I am crying not out of sadness but pure relief and overwhelm regarding the kindness and compassion I have been shown by the staff here. 😭 It is like night and day compared to Sunday. I don’t deserve such treatment. 🥺
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I increased my mealplan today completely unprompted and not waiting for my dietician review (but still only by a sensible amount as per refeeding guidelines don’t worry) 😳 I don’t know what prompted this sudden surge in motivation but I hope it lasts! 🥳🙏
#anorexiarecovery
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Just seen a CBT therapist role advertised for the new ‘mild to moderate’ eating disorders service in my NHS trust. Experience working with patients with eating disorders ‘Desirable’ but not ‘Essential’. This is terrifying. 😔
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I often forget how much my autism affects me. 😔 On the whole I have pretty ‘low support needs’ but when my resources (e.g. energy, blood sugar, social battery) are already depleted, my anxiety can go from 0–100 and I can become completely non-verbal in ‘fight or flight’ mode. 😣
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TW food post (but positive!)
I realised that the soup I had for lunch for today was a little bit lower in energy than normal, so I needed to have something on the side. Instead of having my usual safe food of hummus, I tried some bread my mum bought yesterday 🙏💜
#recoverywin
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Update: I’m definitely being admitted to a medical ward for refeeding, just waiting for a bed which could be a while, but it’s okay. 🙏 The doctor just spoke to me and explained everything. She said I am in the right place and we are gonna take things back from square 1. 🥲
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Revelation: I haven’t weighed myself in almost a week now and I got blind-weighed at my check-up on Thursday. Things have been far from perfect, for sure, but it has made such a difference to my mood and compliance with my mealplan. 🙏 MY WEIGHT LITERALLY DOESN’T MATTER. 😭🤦♀️🥳🥰
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Why isn’t a developmental history a standard part of any mental health assessment? Mental illness in adults usually onset in childhood/adolescence. My ED symptoms started as young as 6 years old and there were clear signs of autism, yet treated now as AN in isolation?
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Why is patient-centred care seen as a ‘privilege’ and ‘going above and beyond’ in the NHS? 🤔 Surely it should be the bare minimum standard! 🫣
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Controversial maybe? 🤔 Reassuring patients with
#eatingdisorders
that you ‘won’t let them become overweight’ or ‘gain weight past their target weight’ only further reinforces the obsession with BMI (poor indicator of health), and speaks to the inherent fatphobia within the NHS.
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Can inpatient
#eatingdisorder
treatment providers please STOP demonstrating how ‘advanced’ they are in terms of care by stating ‘we treat patients with BMIs as low as X’? 🫣😓 It’s only useful information for the referrer and does NOT need to be on a public promotion video! 🤦♀️
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The march this morning really galvanised me into wanting to start ‘owning my recovery’ and taking my own steps towards beating my
#ED
💪 It may not seem like a big deal but challenged a different main at Itsu today (accidentally twinning with
@emilypegg0
🫣🤣) in Battersea 💜🌈🙏
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Emotional day! Marching for everyone affected by an eating disorder, remembering those lost, the carers, those who have recovered and those still affected: we all stand together to call the government to action 🙏
@HopeVirgo
#DumpTheScales
#nomoreliveslosttoeatingdisorders
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@finding_hope_2
Falling between IAPT and CMHT is probably one of the worst failings of the NHS 😔
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I wish that healthcare professionals would start to see emotional distress as a normal part of
#eatingdisorders
, particularly during intensive treatment, instead of viewing it as a ‘hallmark symptom’ of
#EUPD
and therefore proof that the individual should be diagnosed with it.
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I am so tired of fighting the corrupt mental health system, whereby (usually male) psychiatrists are give free reign to give patients outdated labels which prevent them from accessing basic healthcare, as well as support for their mental health. What happened to ‘do no harm’? 😔
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Another u-turn (but a positive one): saw psych liaison who has been in touch with ED team. They said they would offer me day program again within the next couple of weeks if I manage a supported meal with a nurse. I’m nervous as it was so tough last time but I’m going to do it.🙏
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Why do adult
#eatingdisorder
services threaten to discharge patients because they are struggling? It makes no sense whatsoever. 😔 Like you are very unwell and need more support…so we’re going to withdraw all of that support? 😣
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I am creating a petition calling
@NHSEngland
to urgently investigate all
#mentalhealth
providers diagnosing/treating people with
#personalitydisorders
and ensuring that all those labelled with
#EUPD
are treated as per the NICE guidelines (2009) which are being repeatedly ignored:
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Tonight I am feeling helpless about the sheer number of people given the
#EUPD
label, either directly through assessment or added covertly to their records, who are subject to medical gaslighting not only in the psychiatric world, but the general medical world also.😔
#TraumaNotPD
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How do you recover from an ED if you never have any hunger signals? 😞 I can’t eat intuitively and will always have to rely on some kind of mealplan and structure. 🥺 Eating feels like a chore. This is how my relapse started. 😓
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6 YEARS of constantly being stigmatised and having my treatment cut off due to a ‘diagnosis’ that was apparently listed as ‘probable’ on one letter from a home treatment team. 😳 Finally, this diagnosis has been removed from my list of current problems on my NHS records. 🥳🥳🥳🙏
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Dare I say it, this ‘behavioural incentive pathway’ sounds just like ABA for
#autism
but even worse! And the 1:1 HCA isn’t allowed to interact with patients but they follow you everywhere regardless of risk level? What a way to trigger someone’s
#PTSD
triggers? 😭
#TraumaNotPD
Yesterday I had an assessment with a DBT unit called Hope House run by
@elysiumcare
(Yes I’m naming and shaming them).
I’d like to highlight 2 practices they openly brag about within their treatment for women with ‘EUPD’.
1) behavioural incentive pathway
2) blank face 1:1…
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TW
An acute medical doctor reviews me clinically in A&E and mentions NG tube > a psychiatrist sitting in an office not even in the same building declares “she is seeking feeding as a means of intensive support”.
If a doctor states their opinion it does not make it a fact. 😔
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How do you escape a narcissistic parent when you have zero financial resources or social support? 😣 Don’t mention crisis houses or I will lose my shit. They are the worst environment for me.
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Wow, wasn’t expecting that. 🥲🙏 I was actually listened to. 😭😭😭🙏🙏🙏
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So much energy and emotion outside Parliament today 🥺🙏 Let’s get
#DumpTheScales
trending 💪💪💪 No one should be dying of an Eating Disorder in 2024 💜
@HopeVirgo
@drchuks_
@RachaelDownie
@edgi_uk
@EDACautism_ED
@beatED
@FEAST_ED
@SeedSupportUK
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#dumpthescales
march meeting
#CeasefireForGaza
#FreePalestine
protests 💪🇵🇸 A lot of love and support both ways 🥺🙏 We even got a round of applause as we passed The Houses of Parliament 💜
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Is it fair if ED services count you cancelling a appointment as a ‘no-show’ when they repeatedly reschedule your appointments to different slots to you are used to, don’t tell you who is seeing you and then don’t communicate any information when asked? 😣 Autism nightmare!
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I didn’t look at my weight today at clinic for the first time in like years and it was so fricking liberating!!! 🫣😭
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Update:Been admitted to a general medical ward and have spoken to lots of people (too many haha) regarding the plan. I now have a mealplan from the dietician and refeeding bloods etc. are being done. The doctors are in contact with my ED team and I have given my consent for this.
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My ward round lasted 5 minutes. The consultant refused to even look at my letter let alone forward it to the relevant people. I am being discharged home to no support. No physical monitoring. Nothing.
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@adamfare1996
My university (course director) told me they wouldn’t build a ramp into the main medical school building if there was a student in a wheelchair (a simple example I used to be a ‘no-brainer’ analogy) because: “it wouldn’t be worth the money to provide this for only one student.”
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PSA: Don’t commission your
#eatingdisorders
service as an ‘Eating Disorders Service’ if it only caters for anorexia.
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I find it mad thinking I am now the highest priority patient waiting for a bed because of how much damage I’ve done to my body when there’s still ill-informed people out there who would tell me that anorexia is a “rich, white girls illness where you choose to starve yourself.” 🤯
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I went on my first hike (in the New Forest! 🌳) with a large group of people yesterday and it was incredible! 😍Although we walked quite a long way and I was shattered afterwards (slept really well! 😴), I managed to increase my mealplan that day due to the extra activity. 🙏
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@juliaisobela
Honestly some random grad student in my year did this and he would post pics of himself after scrubbing in (totally sterile for sure 🙄) and his train commute with the caption ‘the daily grind’ like mate you’re standing over a body cavity trying not to get in the way. 💀
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@Dr_Done_
I’m not being funny but nurses and HCAs do all of this (with the exception of scribing in ward rounds and discharge summaries as the responsibility for that patient is with the doctor so they are giving the final ‘okay’ to discharge) and they don’t get paid £40K starting salary.
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Wouldn’t it be great if we started treating patients with
#eatingdisorders
with kindness and compassion, as opposed to labelling them as deceitful and manipulative? 🤔
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@autisticpuffin
I’m so sorry I actually cannot believe what I’m reading. 😳 I just got discharged from a general hospital not eating anything as my ED consultant said I was ‘not presenting with symptoms of anorexia’ but that I ‘wanted an NG tube’ as a form of ‘attachment’. 😣
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Really struggling tonight. I can’t stay consistent in recovery. I lasted 9 days. I have zero family support and I get shouted at for making mess or taking up space. My best friend has ghosted me completely out of the blue because I’m going through a rough time. 😔 Fed up.
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Happy Mothers Day 🌸 Challenged a homemade vegan scone for breakfast 💪 Whilst I am (slowly) trying to rebuild my relationship with my mum, I’m very mindful that there are many people who don’t have that opportunity 😔🙏 Today I’m thinking of you 💜
#edrecovery
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@KriscrashQ
Yeah exactly! Fortunately, I’ve learned which situations I can and cannot cope with and avoid stressful/triggering scenarios where possible, but it’s not 100% foolproof 🥲
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Roasted pepper, tomato and butterbean soup 😍🙏 So happy with how this turned out!!!
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Autism/ARFID+ sensory food challenge 🙏 Please no hate because I am aware that this is not substantial/energy dense enough for a ‘meal’, however I am still having my Fortisips as prescribed. This is a challenge not for anorexia reasons but because of new textures and tastes. 💪
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@DrEilidhMaria
THANK YOU FOR HIGHLIGHTING THIS 🥺🙏🙏🙏 As a HCA who has taken patients, performs ECGs, does central line cares and is training to do venepuncture and cannulation, being told that a band 4 nurse associate ‘outranks’ me and therefore I cannot teach them is patronising and wrong.
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UPDATE: I’ve made it to A&E and will not leave without at least a blood test minimum. I feel like a hypochondriac and a malingerer after how I’ve been spoken to today. 🥺 So much more needs to be done RE disseminating the MEED guidelines to all GPs and Emergency medical staff! 😔
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@Meriden59149892
To be treated medically for my malnutrition as a result of anorexia and be given adequate support and monitoring to stay in the community x
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The
#CAMHS
system of punishing young patients with
#eatingdisorders
(e.g. those who haven’t eaten their meal) by ‘grounding’ them or cutting off all contact with friends/family still haunts me as a young adult. 😣 I have regular nightmares about being tubed if I make a mistake.😥
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Woke up to 1K followers!!! 🥳🥳🥳 Thank for listening to my unfiltered, opinionated and occasionally controversial thoughts on this platform! I have met so many incredible, intelligent and determined people from this app (even though I still deadname it by calling it Twitter!) 🫣
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