Don’t let these common misconceptions about caregiving stop you from getting the support you need.
Are misguided beliefs and unrealistic expectations about what caregiving should be like stopping you from getting the support you need? The reality is often more positive.
Mental illnesses tend to be less understood and perceived as illnesses, unlike physical health conditions. This often makes it harder to empathise with the person living with mental illness and their caregiver. As a result, caregivers may feel more isolated in their journey, while dealing with stigma from their wider community and among family and friends.
Caregivers to those with mental illness live with extreme behaviours - rituals associated with obsessive compulsive disorder, elevated moods and risky behaviour associated with bipolar disorder, long periods of withdrawal and self-harm ideation associated with depression, delusional thoughts associated with schizophrenia, and so on.
Navigating the care system can be challenging too, especially where proper expertise in the treatment and management of mental health conditions are lacking. These factors involved in caring for someone with a mental health issue make it all the more necessary for you to get support.
… the person receiving care is a family member.
… the person receiving care is living with me.
… I am doing it full-time.
… I am a certain demographic (40-50 years old, female, single, etc.).
… I am trained or a professional.
In reality, caregivers come in all shapes and sizes. The care provided may be medical or non-medical in nature. It may be performed by a trained professional or an informal caregiver. Caregiving can be a full-time responsibility or an additional role for someone with existing obligations, and may be triggered overnight or develop over time. You could be a primary caregiver who provides most of the daily care, or a secondary caregiver who helps out the main carer. Without recognising yourself as a caregiver, you may not realise that you need support from others and risk your own well-being as well as your loved one’s. Use this self-assessment tool to find out if you are a caregiver.
As a caregiver, you may experience negative emotions but it is entirely okay to not be okay. It is natural to feel angry, resentful, frustrated, discouraged, scared, anxious, tired, and so on. What is unhealthy is not having an outlet for these negative emotions, be it sharing your feelings or taking some time off to clear your mind.
Taking care of yourself doesn’t mean ‘me first’, it means ‘me too’.
A common emotion caregivers experience is guilt. Feelings of guilt may stem from comparing yourself to other caregivers, from the lack of improvement in your loved one’s condition, from hiding his or her condition, from thinking it is your fault, from splitting your attention among other responsibilities, or from taking care of your own needs.
“I used to feel guilty about being 'the normal one' between my sister and I. But I eventually realised that none of this is my fault," says Nadia who cares for an older sister with borderline personality disorder. "You shouldn’t have to feel guilty for wanting to socialise with your friends, for having ambitions, for wanting a career, for having a job that allows you to travel and go to parties.”
Mental healthcare has evolved beyond the realm of medical institutions and professionals to harness community-based resources and social capital in providing holistic care - such as the informal care provided by the social ecosystem of family, friends, workplaces, schools and other groups in the immediate community. Because of the diversity of mental health experiences, strategies that work are going to be diverse too. The best care you can provide for your loved one could come from shared wisdom.
Associate Professor of Communication Dr Zachary White, reminds us in his caregiving blog, “Care isn’t reducible to something that we’re either good or bad at - attention, access, and willingness are the most profound requirements of care that all of us possess. Care doesn’t ask us to be extraordinary, but to be remarkably ordinary. To walk with someone in the midst of need. To listen. To reach out. To be available. To know that we are bound to one another not by competence, but by fragility.”
The truth is, support is available - you just have to lean into it. Many caregivers often have generous or strong personalities, and may prefer not to or do not know how to ask for help. But not speaking up creates a deficit of support, where people remain unaware of the magnitude of the work of caregivers and therefore do not offer help. If you would like to reach out for support, try out some of these help-seeking attitudes and behaviours.
Beyond the people in your social network, there is a wealth of community resources that can support your caregiving of a loved one with mental illness:
If you live in India, Indonesia, Malaysia, Philippines or Singapore, start by looking through this list of caregiver resources.
Want to know more? Here are the articles we referenced to compile this resource:
Five myths about caregivers
Step into the shoes of a caregiver
Explore our first multi-plot interactive video, A Quiet Ripple, that shows what a mental health caregiver might experience - from dilemmas, to a need for support. The choices you make will impact how the story ends. Experience it to better understand the lives of caregivers.