To be open to sharing one's mental health experience is to put oneself in a vulnerable position. It can be risky but also rewarding.
It can be risky because we cannot control how others will respond to us. They might reject us, judge us or avoid us. It is rewarding because others can also respond positively. They can be kind, loving and supportive. There are further rewards to sharing one's story, particularly in raising awareness for a group regularly stigmatised.
Secrecy and the hiding of one's mental health condition can create barriers between people, but self-disclosure can bring people closer, as they turn to face mental illness together.
Yet, in our enthusiasm to raise awareness of mental health issues, I am mindful of the challenges involved in sharing mental health stories, particularly when they are not our own. Caregivers' stories form one category of such stories.
In one scenario, your brother - once a bright student in a top school - has been unemployed because of his chronic mental illness. You want to raise awareness, and talk about the challenges from a caregiver's perspective. Does this mean that you can write and publish his story?
In another scenario, an aunt with dementia who lives with your family is finding it difficult to cope. You are a photographer by training. Should you take and publish pictures of her struggling with daily activities and the family's struggle to help her, in a bid to raise awareness of mental health issues?
Some might argue that, in the same way that a story of mental illness has a positive result of comforting others with mental illness, a story from the caregiver's perspective has the positive result of comforting other caregivers in the same boat.
One clear difference, however, is that sharing one's own story puts one in a vulnerable position, but sharing one's caregiving story does not put one in the same sort of vulnerable position, and in fact reinforces the power differential between the carer and the cared for. It is easy to assume the right to write or speak about a family member who has a mental health condition, particularly when that family member is powerless to defend his or her own position or sense of the story. That family member might also not be in a position to fully appreciate the implications of how he or she is represented.
So a caregiver could unintentionally represent the chronically ill family member as weak or unlucky, or as a broken person, thereby reinforcing the hopelessness of mental illness.
No matter how true this is to the caregiver's perspective or how moving this nihilistic thread might be to an uninformed audience, it could perpetuate stigma and how persons with mental health issues are perceived.
The point of this piece is not to say that stories of mental illness should come only from the mentally ill, and that there can be no legitimate stories coming from caregivers or family members.
However, the storyteller is in a position to influence how the general public perceives persons with mental illness and, therefore, needs to be mindful of how such persons are portrayed in the story.
In being so careful, the story could lose its authenticity, and the result could be a less compelling story. Yet, is a story or sharing more important than the need to protect the person with the condition?
These considerations apply more broadly, and can be extended, to stories about family members or close friends with disabilities or physical illness.
When telling a story about someone close to us who is ill, physically or mentally, or who has a disability, we should try to consider and ask ourselves: What are the ethics of stories about persons who might not be functioning effectively in society, who might not have a voice? Does sharing about a person with illness serve to reinforce the notion that such persons are unable to share about themselves? What are the ethics of stories about family members and/or people who are close to the storyteller?
There are no easy answers. But these are questions that every storyteller must grapple with. Prior to disclosure, the pros and cons must be made plain, to herself and to the person whose story she is privileged to share with the public.
- The writer is the author of A Philosopher's Madness (Ethos Books, 2012), a personal and philosophical account of mental illness. She is currently studying biography and creative non-fiction at the University of East Anglia in Britain.