With our recent article on disenfranchised grief, it was noted that dysphagia can impact many areas of life that are not directly related to the function of swallowing. Angela, an experienced social worker and regular support to many people experiencing dysphagia, has kindly taken some time to explain her experience in working with disenfranchised grief and people impacted by the dysphagia.
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Can you tell me a little bit about your role as a social worker in the community?
My role is primarily about helping clients to access information, support and services to meet their needs and improve their quality of life based on the goals the person has identified.
My role is short term and works is person centred meaning it’s based on a person consenting to engage in the service.
We recently shared an article on The Fourth Place about disenfranchised grief which is actually
a concept that you introduced me too. Can you explain the idea of disenfranchised grief as you
see and understand it?
Disenfranchised grief to me is the grief that is difficult to define and complicated as it isn’t openly
acknowledged socially. It can be unrecognised and a secret grief that a person carry’s alone
and can spiral into feelings of isolation, guilt and fear of feeling less than normal compared to
others. It can be confusing and nebulous, magnifying the feelings of the person’s loss not being
understood or validated.
It’s the type of grief that doesn’t have a public or social ritual to acknowledge this life event that
has happened.
Knowing that for most cases, dysphagia is something we acquire in adulthood. How do you feel
that (disenfranchised grief) fits into the picture?
For people living with dysphagia, disenfranchised grief can be a part of their experience related to losses associated with this diagnosis. The changes in a person’s ability to swallow are significant due to the personal, social, cultural and health changes these changes can illicit.
The physical, emotional, mental and social losses associated with dysphagia impacts on many
significant facets in how we relate to ourselves, to loved ones and people around us. As social
beings we connect through rituals. Sharing food, sharing meals, celebrating a life event, sharing
a non/religious occasion is almost always associated with spending time with significant others
to share a meaningful connection together.
Do you think that changes with time or in the long term? If so, how?
Time can allow for adapting to change. It can also be very challenging when changes continues
to progress and the feelings associated with never being prepared for the next change prevails.
Feelings associated with progression of symptoms can include feelings of fear, loss, grief,
anger, frustration, shame, isolation, loss of independence, loss of dignity, vulnerability, guilt,
embarrassment, loss of joy related to sensory experience of eating and drinking, anxiety, depression and feeling unprepared even when further deterioration is expected.
The Fourth Place is focused on highlighting our relationship with food so, in your experience in
working with people with dysphagia, how do you think that relationship with food changes?
Have you seen any ripple effects associated with that change?
This impact of loss related to the ability to swallow and the impact on a person’s relationship
with food can be life changing.
People living with dysphagia and their significant others are confronted by multi factorial
changes impacting on their day to day lives. Adjusting to swallowing difficulties from mild to
severe changes is constant as we cannot survive without water and nourishment.
Some people describe initial fear associated with emerging symptoms and difficulties, loss of
appetite, fear, embarrassment, anxiety and isolation resulting in withdrawing from meaningful
engagement. This can include engaging in multiple social situations including meal times with
significant others, to participating in social events including family, work, school, wellbeing,
faith related, social and recreational group gatherings e.g. singing in a choir, going to go to
church and continuing with plate sharing in an art group and book club gathering.
In almost every social event, the gathering of sharing food and drink is a pivotal part of this
social/ emotional ritual.
The impact of changes for a person and their loved ones living with dysphagia are cumulative
and can result in anticipatory grief and fear of the future. This can include feelings of fragility,
vulnerability and the loss of control anticipating the progression of further deterioration and
needing to adjust to indefinite changes, highlighting feeling unprepared.
Do you have any thoughts on how we can maximise that relationship with food when someone
acquires dysphagia?
To continue to support the person’s emerging needs in conjunction with supporting their wishes
in relation to maintaining their sense of self and dignity when adjusting to significant life
changes.
Can you tell me a bit about your relationship with food, what role does it play or what purpose
does it bring to your life?
Food is a way to nurture and nourish ourselves as we move through our day to day lives. It impacts
on every part of our human experience and sustains us. I’m grateful I’m able to make my own
choices to nourish and nurture myself.
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The Fourth Place is so grateful for Angela taking the time to share her thoughts on the topic of disenfranchised grief and her ongoing service as an ally and support to people living with dysphagia.
A most revealing article. Most of us take for granted the importance of food and drink in just about every aspect of our lives, both personal and social. Unless we travel with this condition or know someone who is or were, it largely goes under the radar. Thank you for highlighting it.