I am not queen of my own heart, stop telling me I should be

The first thing I do when I wake up is assess what I’m going to be capable of that day. I check in with my body, how much pain I’m in, and where the pain is most intense. I check in with my nerves: how anxious am I? How exhausted? And I check in with my mind: how coherent are my thoughts? Sometimes my brain fog prevents me from doing anything that requires much thinking. Sometimes I’m simply too tired or fed up to consider ticking anything off my perpetually growing to-do list…

Content warning: description of chronic illness and pain, disability, ableism, diet culture, fitness culture, mental health, ‘health’ and wellness’, health inequality and discrimination

The first thing I do when I wake up is assess what I’m going to be capable of that day. I check in with my body, how much pain I’m in, and where the pain is most intense. I check in with my nerves: how anxious am I? How exhausted? And I check in with my mind: how coherent are my thoughts? Sometimes my brain fog prevents me from doing anything that requires much thinking. Sometimes I’m simply too tired or fed up to consider ticking anything off my perpetually growing to-do list.

A recent diagnosis of fibromyalgia, a chronic pain condition caused by problems with the nervous system, has led to this mental checklist becoming a necessary morning routine. Those in the chronically ill community use the metaphor of spoons to help determine our daily abilities: different tasks require certain amounts of spoons in order to complete, and each day we wake up with a different number of spoons to be used. One day I may have thirty spoons to spend, the next I may only have two. It’s unpredictable, and almost entirely out of my control.

Leading up to and following my diagnosis, I was plagued with horrendous feelings of guilt, worthlessness, and despair. Each time I discovered a new thing I was unable to do as well as I once could, I’d agonise for hours, days, weeks, torturing myself with shame and an endlessly worsening self-esteem. Why couldn’t I just get on with things? Why couldn’t I fix it? Maybe if I went for a run, my head would clear a bit? If I cut out gluten, drank more smoothies, thought more positively about my situation, surely then I would be able to do more, achieve more, get shit sorted. I would do whatever I physically could, and more – I pushed myself beyond my limits and forced myself through more suffering in the hopes it would be better in the long run. I was desperately trying to free myself from this curse that had trapped me inside my body, my fleshy cage of pain. But my fibro didn’t go away. I was in a constant, exhausting battle with my own body, and it only made things a million times worse.

Why was I so convinced that I could make myself better? Why did I have this gnawing voice in my head telling me that I was a bad person for being ill, for not being able to do certain things, and for not doing anything about it? Why was I so determined to fix myself, and get back to the me I had been before? My whole self-worth had become attached to my ability levels, and my mental health plummeted to a dark place. How did I get there?


I’m going to use this piece to explore ‘wellness’, and how Western society has turned ‘health and wellness’ into a moral obligation, creating an entire culture based on pushing the responsibility for ‘health’ onto the individual. I will be linking this to the medical model of disability, looking at how the two reinforce each other, whilst perpetuating ableism and preventing progress being made in improving the rights and lives of disabled, chronically ill, and neurodivergent people. When I talk about ‘health’, I talk about the mainstream concept of ‘health’, as seen in wellness culture, as being free from illness, relatively able-bodied, and neurotypical. This does not reflect my personal definition of ‘health’, and I am aware that it is a difficult subject with contested meanings. I would also like to emphasise that disabled does not mean ‘unhealthy’ in any context, and I will never conflate the two. 

Health (as defined by the WHO): a state of complete physical, mental and social well-being and not merely the absence of disease and infirmity

Wellness: the act of practising healthy habits on a daily basis to attain better physical and mental health outcomes

Wellness culture: the culture that promotes wellness, attitudes towards ‘self-improvement’, and methods of achieving optimum states of health and wellbeing

Medical model (of disability): the widely accepted approach to disability that defines a disability as the result of a physical condition, diagnosing and treating the impairment on the individual’s body

Social model (of disability): an approach to disability that defines disability as the barriers in the social world that prevent an individual from fully participating in the world due to an impairment they have

Ableism = prejudice against people who are disabled or perceived to be disabled; it manifests in many different ways, impacting people’s lives in different forms and on different scales; can be explicit or embedded in societal structures

Neurodivergent = differing in mental or neurological function from what is considered to be normal (neurotypical)

Grind culture = a culture of raw achievement where longer and longer hours are not just the norm, but the metric for success; income becomes less and less relevant – work is the end in itself

Wellness culture

“No pain, no gain!”, “health is wealth”, and “push yourself” are a few familiar phrases that surround us in our day-to-day lives. Just a quick Google search led me to websites listing hundreds of similar phrases, tailored towards fitness, diet, mental health, and general ‘motivation’, but after about three minutes of looking, I had to stop for fear of throwing my laptop against the wall in a fit of nauseated, frustrated rage. These are all examples of the language used and attitudes promoted by wellness culture, which has become an absolutely huge influence in recent years. Workplaces implement wellness programmes for employees to promote ‘good health’ and keep absences and insurance costs low; retail and hospitality industries now all have ‘health and wellbeing’ shelves or menus; and health services such as the NHS run schemes that promote ‘healthy’ habits and lifestyles, arguing that preventative measures will help lower treatment costs further down the line. On the surface, these are all very noble advances, but a closer look at the driving force behind them uncovers something more malicious, powerful, and damaging.

A major belief reflected in all the messages we receive about our health and wellness is that anyone who tries hard enough and is sufficiently disciplined is capable of achieving the ideal of ‘health’. If you wake up every day and choose to live differently, you will eventually obtain the gold standard that is advertised. This standard on the whole is portrayed as universally attainable, promoted by a homogenous group of people (usually white, middle-class, fairly wealthy, able-bodied, cisgender), and comes with a how-to guide that contains a one-size-fits-all approach to achieving it. The existence of such a standard is inherently exclusive, leaving behind whole groups of people who simply don’t have the means of reaching it. It promotes an often toxic individualism that completely ignores social, environmental, economic and any other potential factors that influence a person’s health, wellbeing, and quality of life. It also assumes that the only way to obtain happiness or a ‘life worth living’ is through this standard of health, which in itself is incredibly problematic.

By asserting that everyone should be, at all times, aiming to improve their own health, wellness culture has managed to turn ‘living well’ into a moral decision. Those who conform, and make the ‘right’ decisions, are rewarded with a long, ‘healthy’ life, acceptance within society, and the desired morality. Those who don’t are blamed for their moral failings and lack of individual motivation, often stereotyped as lazy, undesirable, and unworthy. The idea of morality, obligation, and duty is magnified by messages that place responsibility for other people on the individual’s own health – for example, NHS campaigns that argue it is our duty to reduce NHS running costs by living ‘better’, and workplace and ‘grind culture’ attitudes that depict productivity as reasons to be healthy.

Not only does wellness culture exclude from society anyone who does not – for whatever reason – adhere to its strict guidelines of ‘health and wellbeing’, but it hugely perpetuates ableism in wider society. It paints a picture of those who deviate from the norms of ‘health’ and who don’t opt in to the prescribed lifestyle as deviant, selfish, and unproductive, and contributes to the ubiquitous stereotype of us as burdensome. If we lack our ‘health’, we are unable to contribute as much to society, economically and otherwise, as those who look after their health, and we may even be a drain – through health services, benefits, sick days. Because being ‘healthy’ is seen as a matter of personal choice, drive, and determination, it is ultimately our fault that we are like this, so ultimately our fault that we are seen as ‘lesser’ than those who are able-bodied. This is the immensely harmful and toxic cycle of logic perpetuated by wellness culture, and it has infiltrated almost every aspect of our lives.

Models of disability

I believe that a key influencer of wellness culture is the mainstream approach to disability we’ve adopted in our society: the medical model. This model has influenced legislation, attitudes, and institutional structure, determining the ways disabled people can navigate society.

The medical model focuses on the individual’s impairment, whether that be blindness, chronic fatigue, difficulty walking, or whatever else that sets their body apart from the norm. It seeks to deal with the impairment itself, viewing it as a handicap that must be treated and fixed. From this perspective, the disability a person experiences is caused by the impairment itself: for instance, an individual is unable to get to the third floor because they are unable to walk up the stairs.

The social model, by contrast, focuses on societal structure, defining disability as the impact the impairment has on an individual’s life, due to the restrictions faced because of this. The social model seeks to alter the environment surrounding the individual in order to better accommodate their needs, thus including them in day-to-day life and ensuring they have the same access to society that everyone else does. In this view, an individual is unable to get to the third floor not because they are unable to walk up the stairs, but because the building doesn’t have means for them to reach the third floor without stairs, such as via lift.

The following table helpfully summarises the basic differences between the two models, part of an article that goes into more depth explaining and critiquing the two. It is important to note that the definitions here are very basic, and there is more to it than a few paragraphs can summarise.

A screenshot of a computer

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There are definite similarities to be found in the medical model and in wellness culture: emphasis on the individual; ignoring the impact of wider structures and environment; and the reinforcement of negative views towards ‘impaired’ individuals. These characteristics all feed into one another, creating a barrier preventing the real structural change and social progress needed to fully include and improve the lives of chronically ill, neurodivergent, and all other people that have been pushed to the side-lines due to their difference. 

The individual and wider society

I think it’s important for me to highlight that I am in no way arguing against the prioritisation of self-care and positive lifestyle choices encouraged by wellness culture. Looking after oneself is an essential part of being alive, and for those with physical impairments, mental health issues, and neurodivergence it is unavoidable, and often the only choice we have. Many conditions, fibromyalgia included, have next to nothing in the way of medical treatments, so the majority of responsibility is placed on the chronically ill individual to alleviate their own symptoms.

I do believe, however, that the way in which wellness culture has taken the concept of self-care, warping it into something so narrowly defined and embedded in morality, has spoiled its radical potential. A wellness discourse around self-care and ‘staying healthy’ has been created, using political concepts such as empowerment, strength, independence, and self-love, and redefining them as individual goals and accomplishments. Not only does this once again exclude from these concepts those who are unable to reach them, but it takes aspects of radical collective movements and reduces them to ‘emotional states’ (see here for further exploration of this idea). Wellness culture and the goals it promotes are divisive, isolating, and distracting. It leads to a culture of people so focused on ‘self-improvement’ they forget that in order to enact real change, and to really improve the lives of those who need it, they must find and come together for a common purpose.

It is very apparent that ableism is at work everywhere. In wellness culture, it is perpetuated by the socially constructed moral imperatives that are impossible for most of us to adhere to. No movement, however positive it may seem, is good, helpful, or acceptable if it does not include everybody. It reduces our worth and validity as human beings, and further solidifies prejudiced attitudes against us. In medicine it is perpetuated by the medical model of disability, depicting our impairments as intrinsic flaws that need to be fixed, and comparing us to an ever-present ‘ideal’ way of being. I know I have definitely suffered hugely as a consequence of these messages, and even now I have not fully untangled myself from the mess of thoughts and feelings that have had such power over my physical and mental wellbeing. 

Both inherently draw attention away from the collective, the social, and focus on the individual – a process that is arguably one of the biggest barriers to significant social change. If we want to see reductions in health inequalities, improved quality of life for the disabled, chronically ill, neurodivergent, and other minorities, and the social inclusion of everyone, we need to see more community projects, more emphasis on social influences, and a shift away from seeking the acceptance of wellness culture through ‘self-improvement’ and virtue. We need to seriously reassess our approach to healthcare. We need to give everyone the space to care for themselves and nurture themselves, whilst knowing that their bodies are worth just as much as everyone else’s. And we need to do this by ensuring everyone has the security of being included, listened to, and provided with accessible options and treatments that enable them to participate in any and all areas of society. We have a lot of work to do.

I leave you with this quote from Audre Lorde, which I believe is essential for any member of a minority community, any activist, and anyone who is tired of fighting to be seen and heard in a world that excludes them from its narrow definition of humanity. It is a reminder that your life is valuable enough to look after, and that the act of caring for yourself is a radical act, filling you with strength in the face of adversity. When I’m tired of being told to change myself in order to qualify as ‘good enough’, it helps me rest, refocus, and remember that society’s failings do not represent my own worth. That is what self-care is all about – wellness culture can fuck right off.

Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare.”

By Meg Reynolds

Header image by Lucia Villegas, one of our brilliant graphic designers.