The importance of disability-informed eating disorder treatment
- Jodie
- Mar 16
- 16 min read
The impact of ableism and internalised ableism: A lived-experience perspective
Jodie is a mental health campaigner with lived experience of an eating disorder, supporting Dump the Scales as the digital communications & inclusion and accessibility lead. She is passionate about intersectionality in both eating disorder research and treatment whilst highlighting the experience of those historically underrepresented and the importance of early intervention with effective and individualised treatment.
My campaigning journey is rooted in my own lived experience of mental illness, including an eating disorder, C-PTSD, and severe depression. During my teens and early 20s, I was also diagnosed with both borderline personality disorder and bipolar disorder - diagnoses that were later understood to be misdiagnosed C-PTSD, Autism and ADHD. Alongside this, I live with Complex Regional Pain Syndrome (CRPS), widespread chronic pain, ME/CFS and other chronic illness'.
Over time, I have become increasingly interested in how my identity as a disabled, neurodivergent, and queer woman intersects with my mental health, and how these identities have influenced both my diagnosis and treatment.
While it is widely accepted that the body and mind should be treated as a whole, too often our identities and experiences are fragmented and placed into separate boxes. This fragmentation has led many people, myself included, to fall through the cracks of an already strained system.
I wanted to share my experiences of ableism within therapeutic spaces, including the ways it has caused harm, as well as examples of good, disability-informed care.
I want to begin by acknowledging my experiences within the broader context of structural power. While my experiences of ableism are real and have had a huge impact on me, they are shaped by the privilege I hold as a cisgender white woman. Despite living with multiple marginalised identities, I have benefited from greater access, credibility, and responsiveness within healthcare systems than many disabled people, particularly those who are Black, Trans, or Economically Marginalised.
I say this not to diminish my experiences, but to highlight the importance of recognising how privilege and oppression operate simultaneously within clinical spaces, and how this shapes who is heard, believed, supported, and who may experience ableism at an increased rate.
When I think about ableism, I think about how often I’ve been expected to function in systems that were never designed for me.
The key themes of experiences of ableism:
Invalidation
Labelled disengaged
Called difficult
Punishments and threats
Denied accommodations
Being ignored and dismissed
Being with-held pain relief
Refusing tests due to mental health
Misdiagnosis
Deemed 'too complicated'
Told I was resistant
Treated as an inconvenience
Discharged when appointments were inaccessible
Forced compliance of inappropriate treatment
Being mocked
Being blamed
Treatment being conditional
Constantly having to prove my disability
Overall systemic failures
Complained to about the cost of my pain-relief
Not being believed
Inaccurate documentation
In terms of internalised ableism, it has been all of the external messaging I have received, whether that be directly or more widely in society (and government) towards disabled people that I have taken on board. Whilst I am working hard to unlearn these beliefs about myself, the voice is still loud, telling me I am:
Lazy | Difficult | Unproductive | Not trying hard enough | Not being adaptable enough | Failing | Falling Behind | Too much | A burden on the healthcare system |
It’s the guilt I feel for resting, for not performing to a high enough standard.
It’s knowing I am capable of so much more, but I am in a body that is limited and feeling so much frustration towards my own disability for preventing me achieving what I want, in a time frame that is deemed acceptable by others.
It’s being hard on myself when this is unachievable, or when I cause myself further harm for pushing my limits. It’s causing myself harm to prioritise compliance that others demand over my own wellbeing.
It’s the resultant doubts over my own reality and feeling angry at myself and my body instead of the systems that continue to fail me, and too many disabled people.
My Experiences of Ableism within Healthcare
Much of the ableism I’ve experienced in healthcare has centred around having to prove that I am struggling. I have repeatedly been told that I don’t ‘look disabled’, as though disability must fit a visible or stereotype to be believed. This was especially the case when I was a child, frequently being seen as ‘too young to be disabled’ and I should ‘wait until I am older to and then I would understand pain’.
Systems are often not built with disabled people in mind, and instead of adapting those systems, the burden is placed on us to justify why we cannot engage or access.
For me, the support has often felt conditional, offered only when I push past my limits, praised when I harm myself through risking flare ups to comply, and withdrawn when I can’t.
I have experienced repeated misdiagnosis, where physical symptoms were blamed on my mental health, and mental health symptoms were blamed on my physical health. Rather than being treated holistically, my body and mind were separated and pitted against one another.
My physical disability led to weight gain due to medication and reduced mobility. Rather than recognising this as a consequence of treatment and disability, medical professionals repeatedly judged and criticised my body, attributing my pain to my weight instead of investigating the underlying conditions affecting my health. When I later began losing weight, this was praised without question. Even when I raised concerns about the anxiety and fear I was developing around food, those warnings were dismissed.
The early signs of anorexia were overlooked because ableist and weight-biased assumptions framed my previous body size as a problem to be corrected, rather than recognising that my health was deteriorating.
My disability has often been invalidated or entirely disregarded within treatment, and I have been denied appropriate accommodations or meaningful support as a result. This has left me feeling unseen, unsafe, invalidated, and blamed for systems that were never designed to support me.
On multiple occasions, I have been discharged from mental health services or threatened with discharge for being deemed ‘disengaged’. This has included situations where I was criticised for not making sufficient eye contact and told to “look at me while I’m talking to you,” implying that I wasn’t paying attention. In reality, forcing eye contact makes it harder for me to concentrate on the conversation. The underlying issue was not disengagement, but that the environments and expectations were inaccessible.
Attending appointments often caused significant pain, yet I pushed myself to attend out of fear of being labelled complex or difficult again.
When pain flares meant I had to cancel appointments, this was not understood as part of my disability but instead framed as a lack of motivation or willingness to help myself.
I have frequently been required to pay for medical letters to prove why I was unable to attend or meet expectations - not just within healthcare but education too. For many people with chronic illness, symptoms that might warrant an emergency appointment for others are part of daily life. We do not seek medical validation every time our symptoms flare, because this has become our ‘normal’. Yet without external proof, our lived experience is not deemed credible. This is something I have been exploring in therapy recently regarding my treatment within healthcare and that for so many people with disabilities, we are not treated as experts in our own bodies, our reality is only accepted when validated by someone else.
Whilst I have had support delayed, declined or withdrawn, in other instances, I was given inappropriate support that caused further harm, and when that treatment failed, I was blamed for not trying hard enough. Responsibility was placed on me rather than on systems that failed to adapt, listen, or provide disability-informed, accessible care.
As a result of these experiences, I have developed a deep distrust of the healthcare system. Even when symptoms are extreme, I hesitate to seek help because I fear dismissal, invalidation, or being told it is ‘all in my head’... all things that have happened repeatedly. In some cases, after months of fighting for answers, root causes were eventually identified, yet I never received an apology, only explanations of ‘human error’.
I spent a year in an inpatient psychiatric eating disorder ward, where there was a profound disregard for my disability. I was in a frail, crisis state and did not initially have the energy to fight back. I raised concerns repeatedly and was punished for non-compliance.
I was told to be patient and that my needs were not ‘a priority’ when pain relief for my Complex Regional Pain Syndrome was delayed or withheld, despite it requiring specialist management through controlled drugs
Yet when I asked what the staff actually knew about the condition to make such an ignorant comment, they could not even name the condition - I had been there a year and even up until my last week they didn’t just not understand my disability, they couldn’t even remember what it was.
Adding to this, staff also openly, and repeatedly complained about the cost of my additional medical needs and I was made to feel guilty… for the cost of my existence as a disabled person, in a place I did not want to be in the first place.
There was also a complete lack of understanding of neurodiversity. At the time, I did not yet know I was autistic and ADHD, but no one identified this in the year I was under their supervision 24/7. Instead, my needs and behaviours were labelled as non-compliance or attributed solely to the eating disorder or OCD with stimming behaviours mocked. I appreciate that it can be difficult to differentiate at times, but I knew then that certain things were not eating-disorder driven, but I was dismissed and made to feel like I was lying or manipulating.
Looking back after my late diagnosis, I can clearly see how many times I was failed.
I was prevented from managing my pain in basic ways, especially at the start of treatment by being locked out of rooms where I could elevate my limbs, criticised for sleeping instead of attending therapy groups, having curtains forcibly opened and bright lights turned on when I was trying to reduce sensory input and labelled argumentative or aggressive for raising concerns about injustice, discrimination, negligence and even data protection breaches that I had seen.
Nausea caused by pain, my medications, or food intolerances that caused physical symptoms were treated as eating disorder related avoidance rather than as a symptom requiring additional support.
I had insisted what I needed in order to be ‘compliant’ with the meal plan treatment to ensure I was meeting nutritional needs but there was a huge resistance to making adjustments and as a result things went backwards.
The ward itself, at least at the time I was there, was not disability friendly - particularly for wheelchair users. The primary access to the ward had a large step and no portable ramp was available and so when using a wheelchair it meant having to be taken around the hospital and through other wards. Whilst it may seem small and that there was technically access it meant people ‘stood out’ and were not treated equally, and in event of a fire would also be at a greater risk.
There were times where there was no wheelchair available on the ward, and so I had to lend my personal wheelchair to another patient as they were forced to stay in their room in essential isolation as a result of the hospital's failure to provide an essential accessibility aid and didn’t seem too concerned about the time it took for a replacement.
These experiences have left me afraid of not attending every mental health appointment, even when doing so causes significant harm / increased pain. I have repeatedly pushed my body beyond its limits to prove that I am not difficult, that I want support and I am trying to engage - leaving me feeling forced into choosing between my physical and mental health, and in doing so, I have often worsened both.
This is what ableism in healthcare has meant for me, it’s not just poor care at the time of treatment, it’s sustained harm that has lasting impacts.
The Impact of Disability-Informed Care
My experience of therapy had unfortunately been very poor for my first decade within the mental health services, from experiences mentioned previously, to being forced into therapeutic modalities that caused more harm because they were deemed the standard and most cost-effective. That’s not to say they aren’t helpful for many people, but due to my disabilities and neurodiversity I did not feel any benefit, and despite highlighting this numerous times I was made to feel like if I didn’t accept the specific modality I would be discharged for resistance and not engaging - the gut feeling was often right.
I was constantly made to feel that I was too complex, and that I was treatment-reistant - that I was the problem and maybe therapy just doesn't work for someone like me.
Thankfully, there was some light at the end of that very long tunnel.
As part of my inpatient discharge agreement my consultant had arranged a new therapy modality for the first time - Focal Dynamic Integrative Psychotherapy with an Integrative Arts Therapist. As a result of my past experience within therapy I was very hesitant, I was not willing to start from scratch again knowing how much time I felt I had wasted in the past, there was also an element of naivety of what this form of therapy was and didn’t think it was for me - thankfully I was wrong. Though the modality is just one aspect of good treatment, what is most vital however, is the therapeutic relationship and continuity of care - at least it was for me.
For context, I began working with a therapist in mid-2021 within NHS Eating Disorder Services and continued until early 2023. I was fortunate to have a therapist who actively advocated for extended sessions when it became clear that standard treatment timelines were insufficient.
At discharge, I was referred back to my local Community Mental Health Team. Despite a clear recommendation for ongoing therapy specialised in trauma, I was declined on the basis that I had already received “too much treatment.” On paper, I agree that I’d had extensive service involvement. However, much of that input had not been tailored or accessible to me in a way that addressed my needs or resulted in good outcomes.
The decision raised a lot of questions for me about how services decide adequacy of treatment.. Is it measured by duration, by number of episodes, or by clinical outcome? At what point does resource management become a dead end on care?
In my case, that dead end was reached at 27 years old.
Just over a year later, I contacted the therapist I had previously worked and felt safe with and who was disability informed. I learned they had established a private practice and have been working with them privately since mid-2024. The shift from NHS-funded therapy to private therapy has really highlighted to me the constraints imposed on my treatment by criteria, service thresholds and fragmentation, commissioning requirements, and the time limited provision of care.
I also want to acknowledge again my privilege in making the transition to private therapy.. I am currently unemployed due to disability and fund therapy through my PIP allowance, choosing to use my very limited financial capacity for ongoing treatment. Many people do not have that option, which again highlights inequities in access and continuity of care.
Disability-informed care has, for the first time in my life, made therapy something I could fully access, engage in, and feel safe and understood within.
What really matters here isn’t that they are exceptional, even though they are in many ways, it’s that so many of the things they do are, on the surface, very simple and basic. In fact, many of you might read these examples and think "well… obviously?"... But that’s the point I want to make. Because in my many many years of previous support with countless professionals, these ‘basic’ things never happened and their absence and harmful treatments mentioned previously have had a huge impact.
From the very beginning, they showed me that my disability mattered and deserved space.
They learned and remembered the name of my condition, something no one had ever really done before and then went away and researched it so they could understand what living with it actually meant. That alone made me feel seen in a way I hadn’t experienced before.
They have always treated me as a whole person, never separating my physical and mental health into neat boxes, but recognising how deeply connected they are. They notice when my pain levels shift, often in ways even people closest to me don’t, seeing past the mask, and responding gently but meaningfully with accommodations such as ensuring they have heat pads or ice packs ready every session in case they are required so I can stay present and reduce pain rather than push past my limits.
So much of their disability-informed care shows up in small, practical ways, such as keeping me well informed about any changes to time, room, or schedule far in advance, which makes an enormous difference for me as an autistic person who finds unexpected change distressing.
They've created a space that truly welcomes sensory needs, not just tolerating them, but affirming them.
They notice when I bring a new sensory fidget, even if it’s just a different colour, and responds with genuine warmth and excitement for me rather than judgement. They also keep extra sensory supports available, like fidgets and specific essential oils that they know helps me regulate, and offers the option of sitting or lying on the floor when needed - whether for pain or sensory needs. I can move, reposition, or adjust my body as much as I need without feeling self-conscious - something that was never possible in past therapeutic spaces where sitting still in a chair was an unspoken (and sometimes spoken) rule.
Another key thing around sensory understanding, would be during moments of distress to use sensory supports to help regulate rather than grounding techniques that focus on the body, as for me focusing on the body means increasing focus on how much pain I am feeling.
They have also made communication genuinely accessible to me - having never forced eye contact and explicitly reassuring me that I don’t need to cause myself discomfort to ‘prove’ I am engaged and is understanding of the harm these kinds of past experiences caused.
I’m never rushed to respond. I’m given the time I need to process without being made to feel like I am wasting time. When I go non-verbal and I simply cannot get the words out, or I am struggling with alexithymia, they adapt without hesitation.
Of course they want to explore what led to that point of going non-verbal, and what is behind the inability to get words out... but not through the force of using words to explain.
Through integrative arts therapy and their overall flexible approaches, it has meant I can communicate through writing, visuals like postcards, objects, simple gestures, emotions wheel, or other forms of creative expression. In the past, when I went non-verbal, I was labelled resistant or disengaged. In that space, it’s simply understood as another way of communicating.
They have been very clear that they values all forms of communication equally and never placed one form more highly than another… because of this, I have been able to share things that otherwise would never have been said.
The therapist also uses these creative techniques themselves to explain what they are thinking about something I have said or my experience as a way to visually show me their thought process and aid my understanding in a way that doesn't demand huge cognitive energy on days where fatigue is particularly bad or just in general to help break things down in a manageable way.
The approach has been very person-centred and non-pathologising. In previous experiences, I was often given labels without understanding. With this therapist I have never felt reduced to a diagnosis or made to feel that my symptoms are inconvenient. My pain is never minimised or questioned, which means I don’t feel I have to hide how bad things are in the therapeutic space, which is still taking time to unlearn as in the past due to invalidation I learnt to stay quiet about my pain levels.
They have also been flexible in practical ways such as accommodating online sessions when needed, allowing changes to days/time when my health requires it, providing clear written policies and appointment reminder texts, and never adding to my energy load with compulsory set ‘homework’. In fact, by removing that pressure, I’ve actually found myself engaging more freely and bringing things to sessions on my own terms because there is reduced ‘demand avoidance’ and anxiety.
The disability-informed care has extended beyond the therapy room too. When long NHS waitlists were causing further harm to my physical health last year, they actively supported me in accessing private treatment for my pain. At an event they happened to come across a business pop-up of a physiotherapist local to me and took their details and passed them on to me. Not only did they actively advocate for me to gain physical support knowing my symptoms were causing distress but they went one step further (and I am aware this may not be financially possible for every therapist, and isn't relevant in an NHS setting) by offering and then reducing her own fee of her own accord so that I could afford physiotherapy to support my disability.
That decision still brings up complicated feelings for me in terms of the guilt for not paying someone what they are worth, but it also demonstrated how they truly understood the impact of my pain, and was willing to step in and ensure I was able to access the support I needed. A year later I am still waiting for the NHS physio appointment, and so without their level of understanding about my physical disability and the impact it has on my mental health, I would still be left without treatment. Thanks to their level of understanding, I was able to get the necessary treatment to regain some function.
More widely, I know that they undertake ample CPD training including in specific disabilities and following them they often share what was learnt as well as resources like books, podcasts or lectures that they think I’d find helpful, engaging, or matches my interests for research and learning about the connection of my own disabilities and also wider intersectionality work. This has come up again recently when I have been connecting dots around another condition and immediately they listened, showed awareness and sent over some resources to support my learning process. I have valued this so much
It's being known in a way that views disability and my special interests in a positive light and not as a burden.
It’s because of this that they were the first professional to recognise that neurodiversity might be a missing piece in my story.
I know many therapists undertake a lot of CPD, but for me it’s especially helpful to be aware of this when they have taken place. It increases my respect for the therapist to know they are investing extra time to learn about and understand issues that affect me. It helps me feel seen and validated, and it strengthens the therapeutic relationship.
When I trust that a therapist has a level of understanding of what I’m sharing regarding my disabilities, it becomes much easier for me to talk openly.
Over time, this consistent, disability-informed approach has built a level of trust that has allowed me to finally explore the impact of ableism and internalised ableism on my life. I’ve begun to understand how much of my burnout comes from pushing myself to prove I am not limited, even when my body is telling me otherwise.
Disability-informed therapy doesn't have to be grand gestures, it’s about attention, flexibility, validation, and a genuine willingness to understand and listen to what the individual needs and what their access requirements are. It’s often the little things that make the biggest difference and can make someone feel truly seen and understood.
I have come to realise that I was not treatment-resistant, it was the services that were resistant to treat, to accommodate and to take my disabilities into account. If we are to ensure that everyone affected by an eating disorder has the best chance of recovery, services and clinicians must ensure that treatment pathways and environments are truly accessible and responsive to individual needs.
This means moving beyond simply offering the “least costly” or ‘standard’ option at the point of access and instead ensuring that all disabled people receive inclusive, accessible treatment tailored to their unique circumstances. Too often, those with more complex presentations fall through gaps in services, leading to longer illness duration and a higher risk of death. If we want to improve outcomes and save lives, research and treatment must expand to include a wider range of therapeutic approaches and appreciate that no single model will meet everyone’s needs.
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