The bottom line ? With a dose of caution , social media can boost advocacy and educational efforts , as well as promote mutual support among people who share similar experiences .
The Role Of Social Media
Like other chronic illnesses , MS can be lonely and isolating — not only for the person with MS but for care partners and caregivers , too .
“ Social media is a great way to avoid that and connect with the rest of the world ,” explains Jon . “ It ’ s an accessible platform for talking with other people . As someone who has been an MS caregiver , I know that shared experiences create rich connections . I want to hear other people ’ s stories and share my own .”
Social media has evolved to the point where a newly diagnosed person can find immediate connections . Chatting with others who are living with MS can be incredibly helpful . Talking about various treatment options , how they work , and potential side effects can provide a jumping off point for discussion with your own doctor , with the understanding that someone else ’ s therapy may not be the best choice for everyone .
According to the Pew Research
Center , about 95 % of adults in the United States use the internet , with 83 % saying they ’ ve been on YouTube , 68 % on Facebook , and 47 % on Instagram . 4 , 5 That makes social media a powerful tool for raising awareness of key issues such as accessibility , medical costs , and how healthcare policies really affect individuals in their everyday lives .
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The bottom line ? With a dose of caution , social media can boost advocacy and educational efforts , as well as promote mutual support among people who share similar experiences .
Shared Decision-Making
A recent survey of patients with MS and doctors in the United States and Europe suggests that over twothirds of doctors make treatment decisions with little to no shared decision-making . 6 The researchers also found that taking an active role in treatment decisions improves well-being and quality of life for people with MS .
It ’ s clear that many people with MS prefer to participate in making decisions about their healthcare . However , a survey conducted through the MS Society in Finland found that people seldom get helpful information from healthcare providers . 7 Instead , they search for information on the internet , particularly social media platforms such as Facebook groups .
Shared decision-making involves finding evidencebased information relevant to your own situation . But issues around MS are becoming more complex as science progresses , notes Jon . “ We still expect the patient to be able to go to a neurologist and participate in shared decision-making that requires homework . The more we can make those complex issues easier to understand and talk about , the more we can have effective shared decision-making .” Jon recommends asking a neurologist to suggest several therapies they think are best based on treatment goals ( yours and your doctor ’ s ). Discussing potential benefits , risks , and side effects — as well as how a particular therapy fits into your life — can help guide shared decision-making .
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