Mrs Kim (“Kim’s Convenience” TV series character) feels numbness and tingling in her hands and legs. From time to time, she feels dizzy and has vision problems as well. However, she thinks it is normal because of the long hours of standing in the store. She visits the hospital after his husband’s incident on the scuba diving course and starts to talk about the change of sensations in her body, and the doctor orders some tests. Screen cut, and next, she sits with the specialist while explaining to Mrs Kim that she has Multiple Sclerosis (MS)! She is shocked and believes it cannot be true because they are strong (people from her country) and they don’t get this disease. Next, she refuses to discuss hospital appointments with her friends because she hesitates to share the diagnosis. Her daughter -Janet- signs her up for a support group with other MS patients. She accepts to join the group, but later, Janet realises Umma told the support group she is there for her daughter, who suffers from MS!
This story is familiar to many of us working with clients facing mental challenges as their main issue or as a comorbidity of another long-term issue. We may have had clients who refused to come to therapy or refused to talk about taking therapy with their family and friends. In many systems (e.g., medical, vocational, or educational), chronic and mental illnesses come with labels that come with negative attitudes, beliefs and practices toward the patient and even their family and people relating to them (structural stigma). Some of these negativities may also show themselves in the community and impact the patient by influencing others’ behaviour and attitude toward the patient (external stigma).
However, it can also have another face: the patient may develop symptoms and complications uncharacteristic of their presentation. In this way, the patient identifies with a typically described patient and starts to adopt attitudes and beliefs related to their role as a patient (internalised stigma). In many cases, this new identification is the patient who comes to therapy and seeks further support. Still, there can be situations where this part of the patient’s personality doesn’t show itself in the therapy room and requires more time to become present.
Structural, community and external stigmas can be a source of shame for many patients. A load of attitudes and judgments can impose a conflict between what the patient thinks others expect from them and what they think the patient can do. This gap can result in a split: what patients require, especially concerning their communication with others and what they feel is approved or expected by others! This splitting can lead to the development of compensatory strategies to allow the patient to find a balance between their internal and external world. However, this balance can be biased because of the shame they experience due to the stigmas. They might become what is expected from them and, as a result, develop a patient subpersonality. This patient subpersonality may start to help the person accept the existence of the condition, but in the longer term, it may influence other aspects of the patient’s life and prevent their future development. Many MS patients start limiting activities that don’t fit with what a patient can do. These self-imposed limitations, in many cases, don’t conform to the constraints they have and are created by what they see as the patient in public. These limitations feed a vicious circle that leads to further isolation of the patient and the development of other secondary complications!
What can we do
Working on stigma should consider all different types of development of stigma.
On the structural level, we require open discussion with public health authorities and government agencies involved in managing and treating long-term conditions. Develop rules that preserve confidentiality and help the presence of patients in public without prejudice. Develop strategies to work with social media and wider communication channels to understand the negative language and images that feed the stigma and act toward correcting them. Start educating at different levels to identify the risk of stigma and its negative impact on people and society. Develop policies sensitive to discrimination and stigma and implement them by involving patients and communities.
To work on stigma in communities such as the community of counsellors and psychotherapists, the first step is designing strategies to recognise and differentiate the stigma from discrimination. The next step is opening the stage for a transparent discussion about the stigma in the community. As stigma can be associated with shame, talking about it might come with feelings such as guilt and lead to self-censorship. Besides, activities in these communities (conferences, publications, social media) can involve patients, give them an opportunity to show their strength and encourage open discussion around the topic. In our community, we can actively search for situations that feed the cycle of stigma, educate people and provide support for patients and their families.
On the individual level and in working with patients with long-term challenges and conditions, it is vital for therapists to be aware of their own biases. This awareness allows a deep understanding of vulnerability and a compassionate-based approach to working with those patients. This approach sees the patient as who they are with their strengths and abilities. It also encourages to use the label carefully with a more comprehensive assessment of their impact on the person’s life.
When working with patients with long-term conditions, it is crucial that we become aware of internalised stigma. Importantly, in the therapy room, it helps the therapist in designing their working strategy if they know which patient is in the room: the patient subpersonality resulting from internalised stigma or the patient who requires help to deal with that patient subpersonality. To gain a clearer image, we also need to see the patient in a bigger picture and understand external stigmas that contribute to the internalisation of stigma in the patient. For example, we need to know the history of the patient and their community and how the conditions and stigmas in those communities are dealt with. For clients from a minority or an under-represented group, we also need to know how the stigma interacts with the picture of the patient in their community and society. This understanding can pave the way for more effective interventions by involving the context in the process. In conclusion, dealing with stigma in therapy requires a multifaceted approach that addresses structural, community and internalised stigmas. We need to develop policies and strategies to promote a non-discriminatory and stigma-free environment in public health, social media, and wider communication channels. At the community level, we should recognise and differentiate stigma from discrimination and open up the stage for transparent discussion around the topic. Moreover, working with patients with long-term conditions demands a compassionate-based approach that considers the patient’s strengths and abilities and avoids using labels carelessly. It is also essential to recognise and address internalised stigma and to understand the external stigmas that contribute to it. Ultimately, by addressing stigma in therapy, we can create a more inclusive and supportive environment that promotes the mental and physical well-being of patients with long-term conditions.