While social media is a great way to wind down by watching funny cat videos, or showing followers what you ate for breakfast, for many people, it's a lifeline.
Many people with disability can connect with others with the same disability via social media. They can also use social media platforms like Facebook to keep friends and family up to date with their health status. They can also advocate for themselves and others with disability - to a private or public audience.
Autism advocate and writer Jeanette Purkis says social media makes her feel less alone. "I say that people live in my phone", she says. "I am in touch with Autistic people from all over the world." Facebook, especially, enables her to connect with people in the Autism community as well as with mental health communities, and create professional networks as well.
Jeanette mainly uses social media for Autism advocacy. "I regularly post blogs and memes and my radio show and media appearances as well as others' posts on Autism. I also do more individual support work for people. I use Facebook and Twitter many times each day and also Instagram - for my memes - and LinkedIn.
Like many people who write about their disability, through Jeanette writing her reality gives other people permission to share theirs. "I do talk about my mental illness sometimes - sometimes for support for me but often it is intended to help others feel talking about their mental health is OK", Jeanette says.
Jeanette doesn't use social media to formally research autism, but it allows her to see how other autistic people manage. However, for many people with disability, social media is a tool for researching treatment. Lisa Cox, who has been affected by an acquired brain injury, says that Facebook is her favourite social media platform. She's used social media for research.
"Because some of my treatments aren't yet common in Australia, I've used overseas forums and discussions to research facts and opinions of other patients and professionals", Nicole says.
Lee Aase, Communications Director, Mayo Clinic Social Media Network, reiterates the power of connection through social media. "It enables chronically ill and disabled people to connect with others who face similar challenges. These tools break down barriers of time and space, so those who otherwise would be isolated are able to come together", Lee says.
Lee believes social media is just as useful for medical practitioners. "Being involved and listening in social media gives practitioners insights into patients¹ experiences outside of the confines of the exam room. And many practitioners take great satisfaction in sharing knowledge with patients and consumers online."
Talya Goding is a young woman with terminal cancer. She runs a blog, public and private Facebook pages, as well as an Instagram account. She shares information about her illness in great detail - often tackling taboo topics which aren't often discussed. She is currently creating an ezine for young people with stoma.
Talya has a large family, and her illness often means she is deplete of energy. She doesn't want to update people individually.
"I choose to post online once so [my family] can see it without the need for me to have to ring everyone or message updates, especially when it's just energy I don't have", she says.
While the majority of Talya's followers have been supportive, she has encountered a few trolls, which have been upsetting. But she remains optimistic, praising social media for enabling her to meet some of her best friends. And she knows the power of sharing her story online. "There will always be the one person to try and bring you down, but for every one that is hurting you could be helping many", she says. "It can be discouraging at times thinking you're not talking to anyone especially if no one is talking back, but that doesn't mean they're not listening."
Being listened to is so validating for people with disability. It can often be isolating and often other people (without disability) speak for people with disability. Social media allows people with disability to tell their own stories on their own terms, as well as feel connected to a community. Someone in a small town, who might never have met another person with their (or a different) disability, can now chat to someone living with a similar impairment or illness in a big city across the world. Medical practitioners can connect with other professionals and patients in other cities and countries, too.
Debra Cerasa, CEO of Otway Health, works in a rural, isolated centre. "Social Media is vital form of valid communication, education resource, connectivity and also can provide support, information and connection very quickly", she says. "My current place of employment uses Facebook to inform the community and also provides a effective medium to advise people of changes."
People with disability and medical practitioners can both benefit from social media. But what about patients and medical practitioners interacting with each other more? "Patients seem to be already there in using social media", Lee Aase says. "It comes naturally when you¹re dealing with a medical concern, to go online looking for answers and support. We encourage medical practitioners to join them by providing training and guidelines so they can interact with confidence."
Here are some ways you can use social media to benefit you:
1. Use some of the exciting new platforms like mycarespace and others like mydisabilitymatters (https://mydisabilitymatters.news/), to connect with others who have disability or parent a child with disability
2. Use your own social media platform to update your loved ones on your condition - as much or as little as you want
3. Don't forget to use it to relax too. Why not share some lovely moments of your day on Instagram?
Tell us about the way you use social media and whether its had a positive impact on your life?
You can follow each of the contributors to this blog here:
Carly Findlay: https://www.Carlyfindlay.blogspot.com,
Jeanette Purkis: https://www.facebook.com/jeanettepurkisbooks/
Lisa Cox: https://www.facebook.com/lisacoxwriter/
Talya Goding: https://m.facebook.com/FeelingOstomisitc/
Mayo Health: https://socialmedia.mayoclinic.org
Otway Health: https://www.facebook.com/Otway-Health-217246404960590/