What I hope psychologists know about stigmatised chronic illness

Disabled and chronically ill people encounter a range of sources of trauma, such as medical trauma and ableism. We need more psychologists trained on these issues.

I once had a psychologist who told me to adopt a ‘never mind’ sort of attitude to my anger at the medical establishment for historically having neglected my illness and for the trauma that medical gaslighting has caused. She was a CBT (cognitive behavioural therapy) and mindfulness-based therapist and suggested I simply ‘let it go’ and stop thinking about it.

Not only is that jumping a whole lot of steps in the Buddhist mindfulness practice (the first step is to feel, accept and properly recognise — welcome even — your feelings) it caused me more trauma: I felt shame for having my anger and I felt shame for not simply being able to let it go. The advice caused me more trauma, as, once again, my thoughts, feelings and experiences weren’t validated.

Photo by Yeshi Kangrang on Unsplash...

I know that my experience with a few psychologists (I’ve also had great ones who understood the things I’m listing here) does not mean that all psychologists are like this or do not understand trauma and stigma. I don’t know how big this knowledge gap is statistically, but from listening to other patients who’ve experienced stigma and trauma their experiences are mixed, too. 

I do want to say, however, that there are immense gaps in the psychological literature on chronic illness. I have, for example,  found it near impossible to find published research on medical trauma caused by gaslighting, neglect, etc., or any evidence-based methods on how to deal with this. I’m therefore assuming that not a lot of psychologists are trained on how to deal with a patient that shows up with medical trauma, whether that trauma was incurred because of stigma, gaslighting, racism, sexism, ableism or other ways. 

I’m in no way blaming individual psychologists as this knowledge gap seems to be a systemic issue, but there are things I hope (and wish) psychologists know about stigmatised chronic illness. Here are my thoughts:

I hope psychologists understand the mechanisms of stigma so patients can understand what is or has happened to them. I especially wish that psychologists understood that stigma does not just happen at the individual level, but that stigma is used as a form of power to discriminate, harm or exclude certain groups of people. There are larger, systemic, forces at play. To read more about an example of systemic stigma, read this post about the real-life consequences of viewing ME/CFS as psychosomatic.

When stigma is only perceived at the individual or inter-personal level, the onus is on the stigmatised patient to learn how to handle or manage stigma and be less sensitive to it, like me having to just learn to ‘let it go’. 

But ‘being less sensitive to stigma’ is a near impossible task, and a large burden to place on a patient already in distress. Stigma carries with it serious consequences, like not being heard, not getting vital needs met in settings such as the hospital, or even abuse.

Instead, by learning about the socio-political forces at play in creating a stigma (forces that seek to discriminate, harm and exclude), a sense of empowerment can begin to develop as the patient moves out of shame, understanding that they are not at fault. Perhaps the patient can even begin to advocate for themselves and others and demand systemic change.

I hope psychologists know more about medical gaslighting and how to address the shame and low self-esteem that comes with it. Read more about medical gaslighting and shame here.

I hope psychologists understand that it isn’t just becoming ill and losing our bodies that is the trauma, it is the horrible ways in which we’ve been treated by either those close to us or/and those who were meant to help us within the healthcare or social welfare systems that is just as, sometimes more, traumatic. 

Psychologists need to understand that our lives are in the hands of health and social welfare personnel and that there is a loss of control that is anxiety-inducing. We can’t just ‘let it go’, and often we need the anger to continue fighting for our rights. We need ways to use our anger for good, not to just ‘let it go’. 

I hope psychologists understand what it means to be socially isolated and have evidence-based methods for how to deal with the emotional and spiritual impact of this experience. Many of us have experienced rejection by friends and family and need to rebuild our sense of self and worth.

I hope psychologists understand that our depression or anxiety is not the cause of our physical illness, you cannot fix our bodies with therapy, but our mental health comorbidities deserve to be treated regardless and without psychologising our physical illness.

I hope psychologists understand that stigma may intersect with other adversaries such as racism, sexism, ableism, ageism, homophobia, fatphobia, transphobia and so forth, and acknowledge that these are systemic issues that cause serious emotional distress and not the individual’s fault, burden to carry or something we can just ‘let go’.

I hope that psychologists don’t force us to ‘think positive thoughts’, especially when the injustices against us have not been acknowledged and dealt with fully. You can read more about the missing ingredient in gratitude practices here.

I also hope that psychologists understand and can see through when we are masking. In the context of disability, masking refers to individuals concealing or downplaying their true challenges to fit into societal norms. Many with disabilities may mask their difficulties to avoid stigma or discrimination. Psychologists need to understand this so they don’t encourage masking by complimenting (for example “oh, but you’re doing so well, you don’t need xyz” or “oh, but you are capable, you did xyz yesterday”).

Instead we need support and courage to be ourselves and to show the world our true level of functioning and our true needs, and we need support to ask for our needs to be met, which can be excruciatingly difficult, depending on the circumstances and who you need help from.  

I hope for more scientific literature on these topics so psychologists can be trained in evidence-based methods on how to help patients who have experienced stigma, medical gaslighting and other forms of medical trauma.

 Over to you…

What are your experiences with psychologists? Good or bad or in between.

What do you hope or wish psychologists knew?

Do you want to know more about stigma and its mechanisms?