Everyone has a chronic illness nowadays- it’s practically a trend!
It’s not often I share my chronic illness with anyone; let alone strangers. When I do, it’s usually as an explanation or an anxious tendency to overexplain myself, such as the example above.
I felt exhausted and in pain when I arrived at my destination for a group outing- my friend noticed my small and usually unnoticeable facial cues and asked if I was feeling alright. A stranger (friend of a friend situation) immediately asked if I was sick. There wasn’t a lot of emotion behind that statement, but there was an energy of urgency or slight panic.
Is a chronic illness considered being sick? Yes, but that’s not what she was probably asking. As someone also with health anxiety (a terrible twin to have with a chronic illness), I knew she was implying to ask if I was contagious. I’d also be heightened by this, so I answered honestly- or as best as I could.
“Oh, I’m alright, I have endometriosis which is a chronic illness and it sometimes hits out of nowhere. All good!”
I could’ve said It’s just really bad cramps - but I’ve also gotten the response Oh so it’s a bad period! (If you’re new to endometriosis, it involves a bad period but does not encompass just those symptoms- in fact, during this time I was nowhere near that in my cycle and got cramps pretty much all the time). I’ve also gotten that my period only lasts like 2 days and then the worst is over (also wrong). I get maybe 2-3 days of minimal pain (not pain-free) out of my hormonal cycle, and the rest is all stormy waters.
I could’ve explained I have a chronic illness and yet here I am fully dressed with makeup on- and my pain comes and goes or I feel makeup is a perfect mask to hide the pain. Sometimes my makeup is a routine to wake my body up and prepare for the day. There are painful days with and without makeup, so while my outward appearance is like any other twenty-something-year-old, I wish my internal body could reflect the same with the fatigue, pain, and anxiety.
I could’ve said a lot of things, but there are some days where I don’t feel like I want to be ashamed of having endometriosis or I want to approach it in a nonchalant way that is honest but also to the point.
To which I get told by this woman: Everyone has a chronic illness nowadays- it’s practically a trend!
What a heavy thing to say to a stranger, but it’s a weight I don’t want to carry.
And I’m not alone.
Frequency Illusion + Social Media
Personal feelings aside, as a society where we have “portals” to places around the world we didn’t once before, our brains are being loaded with information and new ideas. The argument of whether this is good or bad is a completely separate topic, but relatable to the concept of Frequency Illusion.
Originally known as the Baader–Meinhof phenomenon, it is essentially the paradox where once you learn or see something, it feels all-encompassing and everywhere.
I have two personal examples of this that jumped to my mind when thinking about this statement and the paradox- both related to health.
I was first diagnosed with endometriosis in 2018. While eventually I will get to my full endometriosis story, what this means to be diagnosed is to have surgery. While endometriosis can sometimes show up on scans (MRIs, ultrasounds), it is typically “officially”/medically diagnosed post-surgery. I was “lucky” in the sense that my scans did show endometriosis, only because I had a cyst on each ovary that was 12-16 cm and full of dried blood (also known as chocolate cysts, not as fun as they sound sadly).
At the end of my surgery, I got handed a pamphlet with information about endometriosis and was told to continue seeing my OBGYN. That was it.
For a while, I was under the impression everything would get better, but it didn’t entirely. It was different in some ways, but not immensely better. Every continual visit with my OBGYN was just a different attempt at another birth control- it took me about two years to realize she could not help me and was not open about that with me. I am also a strong advocate for birth control- but test trying all the different types and still feeling hopeless is not the appropriate approach for endometriosis pain management.
All this lead to my own research about endometriosis, which I still do to this day. Part of advocating for yourself in this health culture is doing the work ourselves, but making sure we are getting our information reliably. While at the time I didn’t find much about endometriosis, there was also a rising correlation with two “sister illnesses” (that is other chronic illnesses or medical issues that can coincide with endometriosis) which are PCOS (polycystic ovary syndrome) and adenomyosis. I don’t have any of these sister illnesses, but once I learned about them, I heard them everywhere. I found out my college roommate had PCOS shortly after all this research, and we were happy to talk about our experiences although very different. A lot of endometriosis people I found on social media were also vocal about adenomyosis, so I felt like I was seeing that a lot everywhere. Over time my focus on just endometriosis narrowed down, but I remember thinking how strange it was that my research led me to this slightly unrelated but interesting world to see and share with those around me.
The second example was after my blood-clot emergency involving having to take blood thinners for about 1-2 years. My grandfather was on Coumadin for a long time as I grew up and I remember going to some of his appointments, but other than that I was ignorant of that medical aspect of things. After I had my emergency surgery back in 2021, the blood doctor I was assigned in the hospital put me on Eliquis, a twice-daily dose to make sure this doesn’t reoccur as we take the time to figure out what happened.
This paradox is typically found in this particular example: advertisements. Had I seen Eliquis commercials or printed advertisements before? Possibly- but it wasn’t until I was personally on the medication that I saw them everywhere. This paradox is a weird deja-vu except it’s almost like being spied on and fed information (which hey, social media does do) but my television? The newspapers or magazines my parents get delivered?
This paradox is quite real and nothing to be scared of- but often is not talked about when considering trends or why people are seeing things all the time. I thought it was important to discuss before looking at algorithms to placate that this phenomenon has probably existed long before the age of cell phones and social media- and is probably more common than we think or realize we are experiencing.
Is it a trend, or is it the algorithm? Or both?
Two social medias that I use frequently that I also feel comfortable exploring (as I don’t want to act as an expert for any others) that I think have algorithms that feed into this “trend mindset” are Instagram and Tiktok.
Granted, trends are a thing. Fashion always seems to find its way back with low-rise jeans, banana clips, 90s makeup, and more. Perhaps I am a personal believer in doing what you want regardless of trends or if things are “outdated”, but I know these trends and the concept of fitting in go hand in hand. Trends make things very impressionable for the youth and influencers have found the perfect market for that. Even in books, I read dragons long before Fourth Wing came out, but hence more dragon books were explored. It’s not a bad thing, it’s just how society works with trends and the perception of popularity.
Mistaking trends for personal algorithms though is something completely different. The algorithm can be using common trends (closer to October so it is time to shove the Halloween items on the feed) but if you aren’t into fashion, you probably won’t be seeing influencer outfit vlogs or color theory for clothing every day.
Before I go down the rabbit hole for how Instagram and TikTok are programmed for you to see things more (hence creating its own Frequency Illusion paradox), I want to be clear that the rise of certain topics like chronic illness, but also mental health, LGBTQ+ activism, feminism, racial justice, and more are not trends. These subjects I believe are prominent in social media because as a society we are making spaces for these topics, and over time we have become comfortable with these spaces and vocalization of them (although there is still much more work to be done). It is disheartening to hear my own chronic issues be dismissed as a trend, and I have witnessed it firsthand with other LGBTQ+ creators and pronouns being a “trend” (newsflash, everyone has pronouns!).
This example is often used in arguments for such above, but the graph posted in a Washington Post article encapsulates what I’m trying to explain.
Without context, the rise of left-handedness could look like a trend. Was there a study posted in 1910 that said: “Left-handed people are sexier or cooler?” No. Or that they are popular? No. The context is that left-hand people were forced to be right-handed. My own mother, who grew up in the ‘70s-’80s, still had this drilled into her to avoid using her left hand. Now she has adjusted to doing both depending on the activity, but writing or any sort of work resorts to the hand she was forced to use in Catholic school.
Left-handed people were starting to accept their individual choice and strength in their hands despite society’s “norm”, which I think is what a lot of these groups vocalize in the sense they are “going against the grain”. This isn’t saying “F you, societal norms” because I can- but rather a chance to be heard and exist as is and want a collective society to acknowledge existence outside of this norm.
Maybe ‘trend’ is the new word being thrown around for things “being shoved down people's throats” or a way to explain changes in society for progress and acceptance, but regardless, my main goal is to introduce or reintroduce that what you are seeing on social media and interacting with will be shown to you again and again. It’s just how social media works.
Instagram’s own article posted in 2023 (originally 2021 and updated in 2023) by Adam Mosseri touches on this.
Here are the things that Instagram focuses on for your specific feed/explore page (including Reels):
What you interact with (likes, shares, reposts, comments, everything)
Information in the post (content similar to yours or what you interact with, similar location to yourself, posting date, etc.)
Who posted it (again making similar connections between yourself and this person/content, or who else in your circle that interacts with them)
Interaction History
All of these focus on your personal choices and actions on social media, besides perhaps #2. You can’t control if you both live in the same state (but perhaps you “agree” to that when you share your locations for each of your posts). Your feed is flooded with information because of what you are doing on that social media.
On the occasion I go to church, one of the last few visits our pastor was talking about temptations towards the end of the sermon. I remember him saying to “get rid of social media when it shows you naked women” or something along those lines, and I laughed. My dad asked what was so funny, and I explained that if Instagram is showing you “naked women”, it’s either because you follow them or you continually like that content. Safe to say, my dad didn’t really get it, but there seems to be a lack of accountability at least in that atmosphere concerning visual content. Granted I know it’s not 100% foolproof to avoid, but there is still a personal “responsibility” for the content one is exploring on social media.
That being said, I’ve been stuck on some weird niche groups before, and that happens. I recently found out I am lactose intolerant so I used Instagram to look up some dairy-free recipes. Am I a consistent chef/cook who needs that on my feed every day? No- but Instagram thinks that I do or will enjoy it, and I can’t get upset with my feed being food all day if I choose to look at something. Eventually, by not interacting with those explore posts or not using the search tag, they go away.
My Instagram feed is currently full of: books, Baldur’s Gate 3, endometriosis, coffee, and Dune.... which is fitting.
Tiktok uses the same concept of engagement by looking at: video shares and likes, commenting, reposting, saved videos, and fully-watched videos. The only difference perhaps is that TikTok is mainly (it used to be before Tiktok Shop and other things) a For-You-Page only service, which means that while it does cater to your engagements, it does throw in other popular videos that may not relate personally to you. It also, like Instagram, looks at location and the content you specifically post to match with other content.
So what does this mean? These algorithms are designed to entice you. They want to show you things that you are looking at so you stay and engage more.
If you are engaging with trends or seeing a lot of something...it is highly likely it's from your own engagement.
Now I’m not saying this girl who said those words to me about a chronic illness being a trend is constantly looking at videos like that on her social media, but perhaps her social circle exists in that sphere or there’s a similar health topic she’s engaged with that plugs those ideas also onto her feed. I don’t know, and I didn’t really care to stop and ask.
But just because you are seeing more of something doesn’t make it a trend, at least in the derogatory way I believe it was meant. You are in a system that feeds off your engagement, so you play a part in this world of trends or the mere existence of phenomenons that you happen to see or hear of.
Everyone needs to be aware of how these social media applications work, and how they will do everything in their power to keep you there. Yet, both apps have ways to not engage with this content. Instagram can use keywords to avoid, you can block people/content, and especially on the explore page “don’t show me more of this”. During my high health anxiety days, Instagram was great with these features to avoid stories of medical trauma and visits (which it probably fed me because of my medical issues, which makes sense!)- TikTok not so much. I’ve clicked the “don’t show more of this” feature quite a bit, and within five minutes would see another video of that content. Perhaps Tiktok’s algorithm is slower to catch up or it takes a longer time to remove from your feed, but I never found it particularly worked besides blocking those accounts and closing the app when those videos popped up.
I am glad my chronic illness is gaining more attention, if that is how we want to describe continual engagement or content. More research has been funded for endometriosis and there’s been more talk about it on media such as Married At First Sight, the Bachelor, and more shows that have high population views. Raising awareness, even without a cure, is a strong step for others who are struggling and don’t have answers.
Believe me, I wouldn’t wish endometriosis on my worst enemy, so I doubt anyone would be faking endometriosis because it’s trendy or something to do. 1 in 10 people suffer from this chronic illness, many on top of other debilitating issues like PCOS and adenomyosis as I mentioned earlier. I personally don’t share my struggles as openly as other people. I’ve seen so many bullies and trolls on endometriosis pages who are raw and open to sharing them crying, in pain, and struggling. It takes strength to do that, and I just have always been too reserved and introverted to post things like that- but I am so in awe of those influencers. I hope they continue despite constantly hearing what I was told: that our lives and struggles are a trend, or that we are just looking for attention.
Be seen and be heard proudly. Share your stories and pain with the world.