Why "Wellness Culture" Is Toxic. How The Individualization Of Self-Care Sabotages Disability Justice.
Acknowledgement
Let me start by saying that self-compassion, self-care, and wellness practices like meditation, healthy eating, sleep hygiene, long baths and so forth are extremely helpful to many people with chronic illness and disability.
Because people with chronic illness are constantly gaslit about their pain and told not to take the rest and care we need, the messages of wellness culture can be especially helpful and beneficial. For diseases like MECFS and fibromyalgia where no real treatment exists, supplements, massages, and other therapies that simply promote general well-being and overall health are often the only form of care available.
While this post will be highly critical of the wellness industrial complex and of wellness culture, that does not mean that I do not support people with MECFS or any chronic illness from utilizing any tools that help them cope physically or mentally with their illness.
However, just because individuals may benefit from specific recommendations of wellness culture, this does not stop the problematic mindset of wellness culture from collectively harming disabled and chronically ill people.
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Ableism is systemic.
Just like most forms of injustice, ableism is not simply the result of individual people hating disabled people. It is the product of a societal structure that systemically excludes and disadvantages disabled and chronically ill people.
Ableism is not one person having their disability benefits denied. It's having a system that does not provide enough funding to meet the needs of disabled people so that we are forced to compete over who is "disabled enough" to deserve them.
Ableism is not one doctor who knows nothing about MECFS and refuses to learn. It is having a system where doctors are disincentivized to take on complex patients because the massive additional work it takes to properly care for these patients will not be compensated.
Ableism is not a taxi driver refusing to pick up a wheelchair user. Its having a society where wheelchair-accessible public transportation, sidewalks, and vehicles are considered unnecessary because disabled people are not expected to be a part of society.
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Wellness culture presents individual solutions to systemic problems.
Wellness culture offers us products and services designed to make us feel better without requiring any change to the wider world. Are you depressed because you can't leave the house and our communities completely neglect housebound and bedbound patients? Well take bath with this lovely bath bomb and go to therapy.
Even beyond those trying to sell you something, when your health depends on keeping a strict routine and doing dozens of self-care activities daily this is a burden 100% on you and those around you in the form of lost time and opportunity cost.
This solution, regardless of how helpful it may or may not be to an individual, benefits the status quo by placing all the responsibility for solving the "problem" of disabled depression onto the person most affected. In reality, the problem is much more systemic. But individualized solutions discourage us from seeing that.
Disabled burnout happens not just because of a lack of self-care but because of the impossible expectation of a disabled person to manage severe health issues on their own.
The problem is that all these solutions will ever do is help you to cope temporarily. Plus they cost a lot of money and/or time. For rich white women like myself, this might be sustainable for a while. For less privileged groups, burnout from attempting to live up to wellness culture will kick in much more quickly.
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Wellness Culture Blames Chronically Ill People For Staying Sick
While chronically ill people might be painfully aware that an essential oil diffuser is not going to cure their autoimmune disease, the wider public is not. The prevalence of wellness culture minimizes the severity and inevitability of chronic illness and disability by making it seem as though health and "wellness" is an individual responsibility.
"If you don't make time for wellness you will be forced to make time for illness" is a classic example of this. It completely ignores the millions of people who spend all day caring for their chronic illness, largely with products branded for "wellness."
The wellness industry's primary market is not healthy people. It is sick people with nowhere else to go. A healthy person might occasionally splurge for an epsom salt bath. Someone with fibro needs that product every day to cope with pain. But brands cannot admit this or they would have to admit that their products do not actually guarantee wellness.
Finally, say you find the perfect combination of products that do help you function. Say you are in the small minority that has the money and luck to get "better." The wellness industry will spin around and use your story to blame everyone else who cannot afford these products or for whom they did not work. The narrative will become: if only every chronically ill person "took responsibility" for their health like you did, chronic illness would disappear.
But having to spend thousands a month and dedicate most of your time and energy to "wellness" is not the same as being healthy. The burden of chronic illness is just as real. It is just made even more invisible.
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Caregiver Burnout and Proximity Disincentives.
Disability is expensive. Doctors' appointments, specialized equipment, medications, supplements, all of these cost money. Money you probably don't have if you can't work.
The individualization of disability and chronic illness by the wellness industry pushes more and more of the cost of disability onto the individual and their immediate family. In many countries healthcare when formally provided is at least partially socialist. The funding comes from everyone's tax dollars thus placing little burden on the most affected. Even private insurance is a form of burden distribution.
In contrast, wellness products are almost never covered by insurance or government. This means the cost falls squarely on disabled people and those around them. This can create a strong disincentive for friends, family, and loved ones to remain in proximity to a disabled person. They will inevitably be forced to give more (at least in material terms) than they receive.
What is tragic is that this is the opposite of the solution to caregiver and disabled burnout: expanding the community network. When a disabled person is part of a whole group of supporters, the burden is shared AND the disabled person is able to actively contribute as a part of society and community.
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Individualization of societal bias and discrimination stops social movements.
The term "carbon footprint" was coined by British Petroleum or BP as a way to deflect blame away from fossil fuel companies and onto individuals. It has since become the most effective tool for discouraging climate activism and preventing climate justice.
"I am not racist" is the statement most often used to suppress and silence claims of systemic racism. Eliminating systemic racism would mean economic reparations, wealth redistribution. That is unacceptable. So instead we are told that the real problem is bigotry.
"Personal financial responsibility" is constantly used by conservatives to minimize and undermine the truth that you cannot make good financial decisions if you have no finances. The plethora of advice around how to allocate scarce funds, save money by cooking or thrifting, start investing young, all distracts from the systemic problems of increasing wealth inequality.
In every example, the advice itself is good. It is good to reduce your carbon footprint. It is good to work on unlearning conscious or unconscious racial bias. It is good to make smart financial decisions.
Yet in every one of these examples, individualization has been extraordinarily effective at preventing climate, racial, and economic justice.
It is good to practice self-care. But do not let wellness culture be a weapon against real justice for chronic illness and disability.
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How to fight back: Community & Collective Action
The first step towards fighting back against the individualization of disability is finding community solutions. For mental health, this might look like peer support groups and systems of mentorship. For physical health, this looks like collectively donating to and participating in research as well as running our own patient surveys and pushing for publically available treatment guidelines from the best specialists.
While it can be tempting if you are privileged enough to be able to access treatment outside of the traditional medical system to simply bash the system that failed you, we must remember that government-funded care is the only care available to many. So we need to push for frequently updated guidelines and for the ability for doctors to prescribe potentially helpful supplements and off-label medications.
Finally, as advocates, we must balance providing day-to-day self-care tips with the constant acknowledgment that self-care is a privilege and that systemic change is the only real way for most disabled people to truly change their life.
We must support collective action like government petitions, protests, mutual aid and community organization, for both disability justice and intersectional socialist movements that aim to change society to meet the needs of all.
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How to fight back: Self Compassion & Acknowledgment of Impossible Standards
On a more personal level, we should fight back with self-compassion rooted not just in self-care but in acknowledgment of our impossible burden. While we should still utilize any wellness practices that help us cope with our illnesses, we should not root our mental health in single-use consumables but in building community and self-acceptance.
On a practical note: many of the most effective parts of self-care are not the commodities. Do you need a neck stretching device? Or do you need to remember to take breaks to stretch? Do you need a pile of products from lush? Or do you need to give yourself permission for a relaxing night in the tub?
Likewise, many "mind body connection" programs you can pay large sums of money for simply teach openly available information about meditation with a big dose of toxic positivity and rebranded as a cure.
Unfortunately, not all wellness products are just marketing. Many people with ME get significant benefits from supplements and for conditions like MCAS and Fibromyalgia supplements like Quercetin, DAO and PEA are potentially as effective as some medications. But by doing research and working in community we can at least do better at spending our money wisely.
The most important thing we can do for self-care is acknowledge that we are not alone. That our illness is not some individual burden, nor is it our individual responsibility to care for and solve. That we try to find community and that regardless of whether we find it we remember that we deserve it.
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Summary
Ableism is a systemic issue that leaves disabled people with poor mental and physical health outcomes.
Wellness culture offers an individual solution to these systemic issues.
If disabled people attempt to live up to the standards of wellness culture they will inevitably burn out because it is impossible for disabled people to achieve true physical and mental well-being in an ableist society.
If we attempt to pass on part of our burden of disability to immediate loved ones the effects of systemic ableism ripple out to caregivers and those in proximity to disabled people encouraging them to distance themselves.
By isolating and individualizing the effect of ableism on disabled people, society is able to stifle any potential social movements. This pattern has been successfully used to perpetuate climate change, racism, and wealth inequality.
The only way to fight back against this is to go against the individualization of ableism by forming community and spreading the burden of disability widely.
By acknowledging this paradigm disabled people are able to find more self-compassion and well-being. However, the only way to truly secure wellbeing as disabled people is through societal change.
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Ableism is a systemic issue that leaves disabled people with poor mental and physical health outcomes. Wellness culture offers an individual solution to these systemic issues and in doing so distracts from disability justice chronic Illness Awareness and systemic Opression.
If disabled people attempt to live up to the standards of wellness culture they will inevitably burn out because it is impossible for disabled people to achieve true physical and mental well-being in an ableist society.
If we attempt to pass on part of our burden of disabilty to immediate loved ones the effects of systemic ableism ripple out to caregivers and those in proximity to disabled people encouraging them to distance themselves.
By isolating and individualizing the effect of ableism on disabled people, society is able to stifle any potential social movements. This pattern has been successfully used to perpetuate climate change, racism, and wealth inequality.
The only way to fight back against this is to go against the individualization of ableism by forming community and spreading the burden of disability widely.
I have nothing against self-care, self compassion and wellness. But just as you can have hope without toxic positivity we can have self-compassion and care without wellness culture.
Note: Might have to start using summary slides as captions / posting without captions for a while as I haven't had spoons to write captions. Reminder that all my posts are available in text form on my blog. Linked in bio for those who don't like or cannot read slides.
