If you have been living with dysphagia, you are all too familiar with the challenges it brings to everyday life. One important aspect of improving and maintaining your well-being, is ensuring you have the right types and an adequate amount of support. Recognizing and building your support network can be a valuable tool in helping you live well with a swallowing disorder.
In this article, we speak with Jackie Herman, a Registered Social Worker and Director and Founder of Centro Geriatrics in Calgary, Canada, about how we can recognize and consciously build the support around us, towards living well with dysphagia.
What is a support network?
A support network is comprised of “the people in a person’s life that help to encourage them and support them with their personal goals,” describes Jackie. “It can be emotional support. It can be informational. It can be tangible like financial support or intangible like advice giving.”
This can be further broken down into formal and informal supports. Formal supports are often health professionals like your Physician, Speech-Language Pathologist (S-LP), Dietitian, Social Worker, Psychologist or organizations you go to for guidance. Informal supports can include family, friends, peers or peer support groups.
How can I identify who is in my support network?
When Jackie works with clients to help them identify who is in their support network, she uses a tool commonly employed in Social Work called an Eco Map (click link to download .pdf). An Eco Map is a visual diagram of a support network that can help bring awareness to the people in our life who may be providing support.
While a professional can walk you through this in depth, it is an exercise you can start on your own. Jackie suggests you can bring your own awareness to your support network by creating a visual. “Draw a circle in the middle and then draw lines out from that showing a strong bond, neutral bond or a problematic relationship to all the supports around yourself.” Starting this exercise can bring your awareness to the steps you take or resources you access to build your support network.
What problems might I encounter when looking for support?
Examining your support network helps you see you are not alone in managing an invisible disability like a swallowing disorder, but the work may come in knowing what type of support to seek out to build this network. In her work, Jackie often hears that people are afraid to burden family and friends with their disability. “They feel like they have to stay strong and they don’t want to worry them so that’s the benefit of having more formal supports,” she explains. “People are afraid to seek out formal supports because of shame or stigma but the benefit of formal support is that your get a person listening to you who is objective and non-judgmental.”
There is also the barrier of access. “In the pandemic people have had to be more creative in how they’re accessing supports. Like using the internet if they’ve never used the internet before, or Zoom therapy,” Jackie says.
Relying on friends and acquaintances as informal supports may become less available as relationships have moved online and people have less contact with those outside their households. Maintaining these informal relationships has, in some ways, become more challenging.
What is the role of support groups?
Jackie encourages people to look into support groups as a valid and useful part of their support networks. She quotes the popular Researcher, Brene Brown, in saying “Shame needs three things to grow out of control in our lives: secrecy, silence, and judgment.” This can be especially true for people with a swallowing disorder since the disability is not always visible. Finding a group of individuals with experiences similar to your own can help remove stigma and work towards better mental health. These can be facilitated by a professional with formal training, or they may be peer lead. There are many dysphagia support groups available which can become an important piece of your own personal support network.
The challenges of Living with a swallowing disorder is not something you should have to navigate on your own. There are ways you can take control, and lean on your support network. How will you identify and build your support network towards your journey of living well with dysphagia?
Jackie Herman MSW, RSW
Jackie is a Registered Social Worker who specializes in geriatric issues such as mental and physical health, care giving, housing, and health and community resources. Jackie is the Director and Founder of Centro Geriatrics which provides counseling and consulting services to seniors in the Calgary area.
About Mobili-T: Mobili-T is the innovative wireless sEMG biofeedback device that helps you live well with dysphagia.