These wellness culture thoughts about chronic illness are incredibly stigmatising

The underlying philosophy in wellness culture ideas about chronic illness is that you choose to be ill. It paints a false picture that we are in control of our ill bodies.

Photo by Steve Johnson on Unsplash

A while ago, I came across an Instagram post from a wellness guru about ‘5 reasons why your body might be holding on to chronic illness.’ Before swiping I knew exactly what these reasons were as I have heard them many times when I was part of the yoga world. 

I’ll tell you what these reasons are in just a second, but before that, I want to pinpoint the philosophy underlying these reasons:

The underlying philosophy in wellness culture ideas about illness is that you choose to be ill. Not rationally, like you woke up one day and decided to be sick, but subconsciously, because illness gives you something that you haven’t been able to give yourself in your ‘healthy state’, or because it’s here to teach you vital lessons. While it can be a healing process to look inwards, discover and express your needs and grow as a person, it won’t remove the chronic illness from your body (unless the illness is psychosomatic in nature). 

Now, it isn't just one Instagram guru’s thoughts, these thoughts permeate wellness culture. The philosophy that you choose to be sick is the underlying philosophy of a lot of wellness and alternative practitioners. I have taken lots of courses in alternative therapy, I’ve seen lots of alternative practitioners and I have been a part of that world for a good amount of years and the philosophy that you choose your illness subconsciously (some would say ‘spiritually’) is ubiquitous and not far from self-blame.

The ‘you choose your illness’ philosophy is not only harmful to patients as it places an insurmountable burden on our shoulders, it is also stigmatising as it paints a picture that we are in control of our bodies and are simply not working hard enough to rid ourselves of illness. It also perpetuates a story that illness comes with a lot of secondary gains like love, understanding, help, while the reality is exactly opposite.

The first reason the Instagram guru gave as to why we hold on to chronic illness was this:

“It’s the only way you’ve been seen: Sometimes being sick helps us receive the attention, attunement , care, and love we crave so much so that our bodies decides it's better to be sick and be noticed than healthy and never seen.”

Not only is she perpetuating the stigmatising idea that “our bodies decide it's better to be sick” she clearly has no clue as to what chronic illness does to your friendships and identity and how isolating it can be. Most of us have experienced rejection from friends and even family, and compassion is not a given when you become ill.

 The second reason was:

“It’s the only way your “no” has been respected: Sometimes, when we don’t get the chance to say no, our body will say no for us. And if our “no” is only listened to because our illness is the reason for it, then getting better can feel like we would lose our access to boundaries.” 

According to this reason, some people might subconsciously hold onto illness because it provides an excuse to set boundaries. This assumes we’re choosing to stay ill rather than learning to assert ourselves.  But we have had to learn how to assert ourselves and stand by and fight for our no’s and needs to be met in order to stay alive. Our no’s and needs weren’t respected because we got ill. In fact, a lot of us have experienced not being heard when we got ill and our boundaries stepped on because people (especially some doctors) thought they knew better. I’ve experienced first hand how my no’s and boundaries weren’t listened to in the hospital and how sick and traumatised it made me.

 The third reason is:

“It’s the only way your body has gotten to rest: If we’ve lived our life in constant “go” mode, slowing down would have likely felt really hard. If rest was only accessible when your body was ill, it may have a hard time letting go of what it feels like if it's the only channel for recovery.”

So our bodies are holding on to chronic illness because it’s the only way we get to rest. She is assuming that rest is awesome. It’s not. When you’ve done nothing but rest for years and years and years you yearn to live. We have become masters at rest! We know exactly when to rest, how much to rest, how to stop a fun activity mid-way and rest, how to go from adrenaline mode to rest mode. We could write books on rest. Yet we are still ill. What she also forgets is that chronic illness means you are never truly at rest as there is always pain or symptoms and worry about how to get through life.

 The fourth reason is:

“It’s helped harmful people from hurting you: If a healthy able body made you more accessible to harm, your system may fear that becoming healthy will expose you to that harm. It’s important to show your system gently, that being healthy doesn’t have to come with consequences.”

This implies that people living with chronic illness hold on to their illness as a defense mechanism, and as a way to ward off trauma. I can understand that this may be a factor in certain trauma-related illnesses, but this is not the case for non-trauma related chronic illnesses. Also, chronic illness in itself is traumatic, and the way a lot of us are and have been treated in the medical and social welfare settings is harmful and traumatizing in and of itself. Some patients have been outright abused and tortured due to ableism, racism and sexism.

 Her last, and fifth reason for why we hold on to chronic illness is:

“It’s protected you from having to do things that overwhelmed or traumatised you: If a healthy body was required to take part in or be exposed to something overwhelming, dangerous, scary, or traumatising then our system may learn to find safety in sickness.”

I have never felt more unsafe than when I became ill and I know this is a general feeling amongst a lot of my peers. She assumes that chronic illness is a cute, cuddly, safe space where nothing bad happens, but the reality is harsh. A lot of us, when becoming ill were forced to do things that overwhelmed or traumatised us because those around us didn’t understand our illness. A sense of safety was the first thing we lost when becoming ill.

These wellness culture thoughts are harmful and stigmatising to people living with chronic illness as they paint a picture that chronic illness gives us a lot of gains and that we choose to stay ill. 

These thoughts, especially the ones about secondary gains, have also permeated the medical setting and patients living with chronic illness, especially the underfunded and under researched kind like ME/CFS, Long Covid, fibromyalgia, endometriosis, migraines, and so forth have felt this stigma when we were gaslighted by doctors, or when our needs weren’t met, like asking to dim the lights or turn down sounds so as not to be tortured. 

In fact, the philosophy that we hold on to illness for secondary gain (such as attention, benefits, care, etc.)  is a prevalent thought within the ‘functional disorder’ theory. Illnesses and conditions such as ME, fibromyalgia, irritable bowel syndrome, multiple chemical sensitivity, chronic complex pain syndrome, whiplash and other underfunded illnesses that disproportionately affect women are lumped under this ‘functional disorder’ diagnosis in Denmark and it has caused obscene amounts of harm for a lot of patients, the worst kind of harm being sequestered into psychiatric care where patients may be forced to tolerate light, sounds and smells, walk more than they are able to, and where they are generally disbelieved. 

Tell me…

What are some common wellness culture myths about chronic illness that you have heard?

How does it make you feel when someone suggests you are ‘holding on to your illness’?

What can we do to prevent these myths from spreading?

Thank you so much for reading this post. If you know someone who could benefit from this, then please share this page with them. You are also more than welcome to share it in your Facebook or other patient support groups.

Did you miss?

The real-life consequences of viewing ME/CFS as psychosomatic

 The shadow-side of mind-body healing: Overcoming self-blame and shame

What I hope psychologists know about stigmatised chronic illness

Meditation: Calming an overactive mind

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