Social Media Was Useful For Me, As An Ill, Nerdy Teenager
Lately, concerns about allowing minors to use social media have been front and center in the public discourse, but ways in which they use it productively have been absent from the conversation. My own anecdotal experience does not constitute comprehensive data, but it’s important to understand how social media can be extremely useful for teens who are sick and who have unique interests. Current proposals and laws range from restricting minors on social media to outright bans. Many of these laws would have prevented me from finding medical answers, friends, and career options.
My autoimmune disease count is up to eight, and always growing. Last year it was a solid seven, and six the year prior. Autoimmune diseases tend to come in groups and can mimic each other, making diagnosis difficult. Ever seen the Simpsons episode with Mr. Burns’ doctor explaining how his many diseases work together by pushing a bunch of fuzzy toys through a door? (See: Three Stooges Syndrome.) My first diagnosis was at the age of 13: Crohn’s Disease. It’s only the beginning of the story.
Current laws and proposals would endanger minors’ access to health information
A key piece of how I found my answers both as a teenager and an adult was social media. As I tell my story, it’s important to keep in mind that support forums for people with various medical conditions would be covered by many new social media laws and proposals intended to protect kids online. Multiple proposals completely ban minors below various ages from accessing social media. Even for the laws and proposals that don’t ban minors from using platforms but instead require parental consent, that minor will then have their and their guardian’s personally identifiable information tied to a forum about their condition forever.
The most effective age verification tools currently in use require very personal information, from government IDs to face scans. This is troubling for many reasons, a key one being that platforms regularly suffer from data breaches and hacking. While I am open about most of my health struggles, many people understandably want to keep their medical information private. Not only would tying one’s identity to sensitive medical information discourage speech, it would also discourage support networks and medical information sharing.
My diagnosis process before social media, and then with social media
It took well over a year, eight gastroenterologists, five gynecologists, two colonoscopies, endless cat scans, blood tests and more to get my endometriosis diagnosis. My father had suggested that exact diagnosis early on after some research, but multiple doctors dismissed the possibility. Being very sick as a female teenager led to more rolled eyes than genuine concern. Seven gastroenterologists, two gynecologists, one school psychologist, and various other medical professionals completely dismissed me. Sure, they would find an inflamed colon or an ovarian cyst or fluid in my pelvis, but that wasn’t enough to overcome the fact that I was too “young” to have any condition. This period of my life was hell. I was very sick, I didn’t know why, and with enough doctors calling me “crazy” or telling me I should “stop lying” or “go to the mall,” I questioned my own sanity.
The last gastroenterologist was very helpful and agreed I had Crohn’s Disease—a diagnosis I received from my fourth gastroenterologist after a colonoscopy—but believed my most severe issues may be caused by something else, and it was beyond his expertise. After a visit with a third gynecologist, a fourth confirmed his suspected diagnosis: Endometriosis.
Until recent years, this disease was often written off by doctors as “in your head” even when internal bleeding and other clear signs were visible. Later, I learned it took some women as much as 20 years to get a diagnosis. My endometriosis was successfully removed during a laparoscopic surgery when I was 14 years old. The surgeon noted the severity of my endometriosis. No wonder I was prescribed Vicodin by a pain management specialist, and the pain was still pretty bad.
During the next few years, the medical tests slowed, but did not stop. I still had unresolved symptoms and wanted to figure out what was causing them. And by now, I was understandably skeptical of medical professionals and began more research of my own. After years of my primary care doctors writing off endless colds and infections as “a bad season,” I searched something like “endometriosis” and “getting sick all the time.” I ended up on a message board—a form of social media—where someone described the same problem and that they had been diagnosed with fibromyalgia. After finding rheumatologists in my area and their reviews, I settled on someone a bit far from me because he was so highly rated. He instantly recognized my symptoms as that of fibromyalgia. Since he prescribed me Cymbalta, I spend a tiny fraction of my time sick as I did before and my seasonal allergies no longer induce asthma.
These days, my favorite doctor who has helped me identify and treat several smaller diseases will actually conduct internet research in front of me. But in addition to this, most successful supplements and diagnosis recommendations for me began on various forms of social media. A random follower of mine on Twitter recommended a supplement that I began taking after checking its interactions with my other medications and supplements, and it has greatly increased my energy and overall well being.
Another person on Twitter discovered the source of one of my strangest symptoms that I’ve been trying to figure out for years, and it works a lot like Erythromelalgia. I’ll be talking to my doctor about it soon. Without the use of social media as a teenager, I would not have my fibromyalgia diagnosis and I would not have been able to learn how to use social media to find answers to my many medical problems. And although I am very open about my experiences now, it wasn’t always that way. Plus, age verification as a barrier to accessing these forums may have given me pause in asking for help and researching my medical problems.
Social media gave me a career and a hobby
And as one can imagine, with severe pain, nausea, and exhaustion comes a lot of time on the couch. When I was at my worst at ages 13 and 14, I watched a lot of news, and it grew my passion for politics. I decided at the time that I wanted to be a U.S. senator (hence “Senator Shoshana”). My father found the local Young Republicans club, and I became fast friends with many people in their 20s and 30s who treated me like a younger sister. Over the following years during high school, I would keep in touch with these new friends on social media. My friends from school didn’t care much about politics, and it was a good outlet for me to talk with likeminded people. Under several current legislative proposals, this would not have been possible.
Local elected officials and government staffers would often add me as a friend on Facebook. It was an incredible way for me to network and acquire opportunities to intern as a teenager, in addition to the in-person events. Unfortunately, many laws and legislative proposals limiting the use of social media by teenagers specifically prohibit people who are not already friends with the minor from finding them in search results or messaging them. If this was law during my teen years, it would have prevented me from growing my career by talking to elected officials online, even with parental consent.
This list isn’t exhaustive. I made friends on social media with a talk radio host whose ideas resonated with me—we’re still friends today. I have been sewing since I was eight years old, and loved Project Runway. I added my favorite designer from the show and his model on MySpace, and was able to converse with and learn from the model. I also made friends with a model from a vintage clothing store who was very supportive of my sewing and taught me about vintage clothing. All of this and more showed me how big and how small the world was, and all the opportunities at my keyboard that I could use to grow as a person and as a professional. My thinking regarding laws about social media isn’t so much about protecting what I had, but more about not closing the door to all this opportunity behind me for future generations.
Outright government bans are the wrong strategy
Not all minors will use social media safely and productively. Parents have an important role to play by talking to their children, using filters, or maybe banning their children from social media where appropriate. But outright government bans undermine parental and child choice. And legally-mandated age verification creates tethers to one’s online information where anonymity would be preferable, in addition to security concerns for children and adults alike.
As is the case with all government action, well-intended proposals can have negative consequences and stifle people’s opportunity. If these proposed social media restrictions had existed when I was younger, it’s possible I’d have missed out on formative pieces of my career, not to mention hobbies. And who knows, I may have never gotten the health diagnoses that drastically improved my quality of life. I implore policymakers to think before they take these social media ban leaps and unintentionally hold back generations to come.