YouTube Can Be a Great Chronic Illness Support Group — For Those Who Are Careful
OK, I’ll admit it — I enjoy listening to various YouTube channels. Granted, it is mainly due to my painsomnia, as it helps to escape into funny cat videos or other mindless entertainment and can be distracting for my chronic pain/symptoms. If you haven’t been on the platform recently (or at all), YouTube is not just tutorials for changing a flat tire or literally anything else you want to know. It has truly become a smorgasbord of channels consisting of commentary, opinions, politics/news, animal videos, medical diagnoses & treatments, true crime, pranks, podcasts, reality tv shows, gaming, and yes, lots of “drama and tea.” Even many singers, organizations and celebrities have their own YouTube channels!
Many channels do what is called livestreaming. This is when a YouTube content creator speaks to and interacts with a room full of watchers live (sometimes alongside a panel of other people), and those watching have the ability to chat in the livestream simultaneously — similar to a Facebook, Twitter or Instagram live. And while I have not really joined in chatting myself, I have noticed that chatters will inadvertently give a lot of personal information about themselves, including medical diagnoses, medications prescribed, treatments, mental health issues, where they live, doctors’ names, and other private topics. In the chat, people are strangers, some with an anonymous screen name and some who use their real names. Some people even use additional “soc puppet“ accounts, otherwise known as alternate or fake accounts in order to have multiple identities. Anyone can be anything on the internet.
As the same YouTube content creators (and similar overlapping channels) have multiple livestreams over time, you inevitably end up seeing the same chatters. And many times, after “meeting” in various livestreams, some chatters will decide to take their conversations and newly formed relationships off YouTube via other social media forums, discords, email/text or even in person, thus forming their own pseudo support groups and friendships.
Are we desperate for support?
Those of us with chronic illnesses and pain are often desperate for human connection — especially if we find people who have the same or similar medical diagnoses or life circumstances. Many of us share the same feelings of loneliness, isolation, and sense of loss, especially if we’re homebound/bed bound or unable to drive, which draws us to one of the only outlets we have for bonding with others — accessing social media and of course watching YouTube livestreams and chatting. Often times, because of our vulnerabilities, these online connections may seem much deeper than they truly are.
So is this support a good thing? Can it be dangerous?
As a general statement, I believe those of us in the chronic illness and pain community need good peer support — it is one of the most healthy things we can do to navigate our medical conditions. Having said that, the internet can also be a very dangerous place! I have witnessed firsthand when some of these YouTube “support” relationships turn sour, and the results have been shocking. As internet “friends” turn to enemies, bullying, harassment and even cyberstalking can ensue. People have been doxed (private, personal information such as first/last names, phone numbers, addresses, etc. and even private medical and financial info released in a malicious way on the internet). People have been publicly embarrassed and humiliated by name-calling and “trolling” — some have even been threatened. Family members have been contacted. Children have been brought in the middle of online fights. Jobs have been called and professional licenses reported. Police wellness and CPS checks have been initiated and restraining orders and defamation lawsuits have even been filed! Online communities can become a mob mentality surrounding the drama which puts mental health and safety at risk, on top of being stressful for medical issues.
Be careful who you donate to online
Another thing I have witnessed on Youtube is fraudulent fundraisers, including ones for fake cancer diagnoses, medical issues that aren’t real and a whole host of other exaggerated “tragedies.” Unfortunately not all people who say they have medical crises which require fundraising online can be trusted. There have been many YouTube content creators who have been caught scamming for donations via YouTube and the site Go Fund Me (among other social media sites). It is always best to ask pertinent questions and use critical thinking skills, vet who you’re donating to, or just donate directly to legitimate charities.
Bottom line — finding peer support on YouTube and other social media sites can be positive and is very worthwhile for those of us with chronic illnesses and pain; but it’s best to find support through groups that are affiliated with an organization or hospital if possible and watch YouTube for information and entertainment purposes only! And always be careful with the types of private information you share to others on the internet.
Do you have any stories of internet “friends” that ended badly? Leave them in the comments below!
Bonus – Resources are linked below for Chronic Illness-Specific YouTube Channels
“45 Chronic Illness YouTube Channels”
“18 Chronic Pain Video Channels On YouTube”
“8 Chronically Ill YouTubers To Follow For Daily Inspiration”
Getty image by Elena Kalinicheva
Melissa Wardlaw was diagnosed with CRPS type 2 resulting from a spinal cord injury (non-paralyzing) suffered during routine epidural steroid injections. She was subsequently diagnosed with fibromyalgia, sinus tachycardia and additional chronic medical issues. She also has lumbar and cervical degenerative disc disease/arthritis, sciatica, endometriosis and migraines. Formerly a Business Executive/Consultant with an MBA in Entrepreneurship, Melissa is also a Certified Career Coach and Certified Professional Resume Writer, and now spends her time career coaching and “paying it forward” by offering peer counseling/advocacy to those dealing with similar medical struggles. She is also a Contributing Writer and Guest Blogger for digital publications. As a fierce advocate, Melissa runs an in-person and online support/empowerment group for CRPS/RSD, chronic illnesses and pain in the Metro Atlanta area. She volunteers and supports multiple organizations committed to rescuing animals and helping those with chronic illnesses/pain and invisible disabilities. Melissa encourages fellow patients and caregivers to reach out to her for peer support at crpsatl@gmail.com.
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