Jaime Sanders explores the good and bad side of social media when you live with chronic illness, and believes that the good outweighs the bad.
We’re living in the era of social media.
It started with chat rooms, email lists, and small social networks primarily made up of friends and family, and has grown exponentially over the last decade. Now we have a variety of different platforms where we can connect and share information with people all over the world.
Many of us in the chronic illness community struggle with isolation — sometimes because we’re often not physically able to get out and be social, and other times because it’s hard to find people who can relate to what we’re going through.
Social media has done a lot to change that.
With online platforms, you can find others with your same condition who know exactly what you’re going through, regardless of location. The internet can introduce you to support groups, organizations, and events that you may not already know about. When you need it, support is just one click away.
Many people aren’t aware of what it really means to be living with chronic migraine. Because of this, they may diminish the impact of this disease with misinformed comments, which can make people with this condition feel alone and invalidated.
I’ve experienced this firsthand over the years. But social media gives me a voice. Through my blog and my various social accounts, I’ve been able to educate others by sharing my story.
Here are some of the ways I feel that social media is a useful tool for those of us living with migraine and other chronic illnesses.
The internet offers an easy opportunity to make noise and raise awareness about important issues. Many health organizations turn to social media to alert the masses about events they’re holding or shine the spotlight on people in need.
Organizations dedicate certain months to raising awareness for different conditions, as well as holding fundraisers, walks, races, or education days. Some may even encourage people to participate in social media challenges, like posting or tweeting one fact per day about their condition.
When you’re living with a chronic condition, some days you won’t feel able to leave your house. Social media is a way to connect with others and build a community without having to go outside.
Support groups are a judgment-free zone where people can share their experiences with people who truly understand. They can be of great comfort to anyone going through a difficult time. In these groups, people feel more relaxed and able to be their true selves.
Online support groups are convenient, easily accessible, and typically available 24/7.
Access to experts
Chances are you’ve come across an informational video at one point or another while scrolling through your Facebook feed.
Over the last few years, sharing videos has proven to be a great way to reach and educate people. Many health organizations share Q&A videos with medical experts on their social pages to raise awareness and educate viewers. Twitter is well-known for having live chats where people answer questions on a specific topic to see how they manage or cope with different aspects of their illness.
Living with chronic migraine has always been challenging for me. Most people don’t realize how severe migraine pain is and that it’s much more than just a headache.
Social media allows people to tell their story publicly. For people with a chronic illness, this can mean squashing popular misconceptions and getting their voices heard. By blogging about my life with chronic migraine, not only am I able to connect with others like me, but I can also help chip away at the stigma surrounding the condition.
Whether it’s the ups and downs of testing out new treatments or the art of balancing family life with a chronic illness, sharing what I’m going through allows others to feel validated in experiences they may have in common.
Through social media, I have created profound relationships and had some very memorable experiences. When I decided to share my journey with chronic migraine and started a blog, I had no idea it would lead to a new family.
So many wonderful opportunities have arisen due to my social media presence as well. In the years since I began using social media as a platform, I’ve even been able to forge relationships with organizations that provide support, resources, and awareness for others living with chronic illnesses.
The first memorable experience I had was being asked to participate in a panel discussion at the BlogHer Conference, one of the largest women’s conferences in the world, in 2016. This was the first time I shared my story in a public setting. To see it resonate with the other women in the room was so validating, not only for myself, but also for them because they had been living with migraine in silence. Being given this opportunity to share my story with so many people was humbling and empowering.
Meeting other migraine bloggers has been another perk of social media. I’ve developed a relationship with women whose lives and missions are similar, if not almost identical, to mine. We are a tribe of sister warriors who hold each other up during difficult times, praise each other’s accomplishments, and support each other’s projects. It feels so nice to know that understanding, love, and compassion are just a text message away.
Blogging, tweeting, and posting on Facebook and Instagram has opened up my world in ways I never expected. My self-advocacy created a space for me to empower others to advocate for themselves. It’s truly amazing hearing and seeing stories of how my personal journey has helped someone see the beauty, strength, and power in themselves.
Knowing that none of us are defined by our illnesses has transformed my journey in a way I can’t fully describe, but I know that none of this would have been possible without social media.
As with almost everything in life, there is a downside to social media. Posting about your illness opens you up to scrutiny from others.
People who don’t have the condition might say insensitive things. Some with the disease may speak out against your ideas or approach. People can be very mean on the internet because it’s a nonthreatening way to confront a stranger or voice an opposing opinion. With the protection of a computer screen or mobile device, it becomes easier to say things we normally wouldn’t.
You may find people who question your illness or even prey upon those with chronic illnesses by advertising false “cures” (for a price, of course) that have no basis in science.
You may even find that people on social media trivialize your illness without even realizing it, like the makeup artist who made headlines this past summer for her “migraine pose.” The makeup artist said that this pose — holding your face at your temples as if you were experiencing a headache — gives you an “instant facelift and is a great way to show off your manicure.”
Needless to say, those of us who actually experience migraine know that there’s nothing cute about it. Not only was the post tone-deaf, it inadvertently diminished the very real pain and frustration of millions of people living with migraine by reinforcing the false idea that migraine is just another headache.
Even with all its drawbacks, social media has made a positive impact on my journey with chronic illness. It’s helped me to tell my story and connect with people in a way I never thought possible. It has given millions of people a voice, a sense of belonging, and a place to share their stories.
And that’s just it — social media gives everyone a platform, for better or worse. But you have a choice in what you consume and how you react.
If you receive an unpleasant response to anything you post, it’s not because you said or did anything wrong. The person responsible could be projecting how they feel about themselves onto you.
Try to take it with a grain of salt and remember that not every response is worth a reaction. Focus your attention and energy on accounts or groups that provide support, empathy, and inspiration — and don’t be afraid to block, mute, or unfollow as needed!
The information presented is solely for educational purposes, not as specific advice for caregivers or the evaluation, management, or treatment of any condition.
NPS-ALL-NP-00947 MAY 2023