“You have lupus.” Finally, a name for how I’d been feeling almost my entire life.
The diagnosis was long awaited, and I’m considered to be diagnosed at a young age: 16. Most people with autoimmune disorders don’t get one until much later in the progression of their illness. In this way, I’m lucky. An earlier diagnosis means disease management starts earlier, and bigger issues can be monitored and prevented.
Growing up with the internet at my fingertips, however, has been both a positive and negative aspect of getting a diagnosis.
On the positive side, I have easy access to crucial information regarding medications, symptoms and new studies. There is also a giant community of other people with chronic illnesses, not just lupus, on the internet. Tips for being sick, guidance on how piercings and tattoos affect people and different home-management strategies are shared among one another.
This community is often referred to as “spoonies,” based on Christine Miserandino’s theory that people with chronic illnesses and other disabilities wake up each day with a certain number of “spoons” of energy. Sometimes, you could have 10 spoons; and other days, only two. The idea is that the spoons run out during the day — and we crash. While individuals without disabilities wake up with unlimited spoons of energy, we have to learn to conserve our spoons to complete our tasks for the day before crashing.
I learned that from the internet shortly after being diagnosed. At 16, it was comforting to know that millions of strangers have similar experiences to my own.
Then I hit the dark side of chronically ill social media. Disguised behind cute designs made in Procreate and positive slogans, this side of social media is almost too positive.
This issue is a product of the internet as a whole — not just chronic illness social media. The community of people on the internet is awe-inspiring, yet toxicity and fake positivity are prevalent issues. Clicking on #chronicillness on Instagram leads to an array of brightly colored posts, random doctors advertising their books and memes that look like they’re from 2014.
For me — and maybe I’m just a pessimist about it — this side of chronic-illness Instagram does as much harm as it does good. It turns real, traumatic illnesses into catchy phrases, making them more palatable for the general public. I understand this is a way to vent for some and that it can attract people to posts that can leave them more educated. However, seeing the words “don’t let the lab results get you down” in big, bright bubble letters is really not that uplifting.
This toxic positivity almost forces you to think differently about being sick. Put into perspective what your body is doing, not just how it’s failing. Focus on the bright side. Just breathe, it will all be OK. Yes, every once in a while, it’s good to have a reminder that you aren’t alone and that there’s more to life than your illness. But, at least for me, it isn’t honest.
Don’t let the lab results get you down. I don’t really think that’s something that can be fixed by a change in mindset. What’s honest is that the lab results are terrifying. A slight change could be a cause for concern, and you have every right to feel that way. Saying “don’t be down” doesn’t erase the results. It doesn’t erase the reality of it all.
Just because you follow a few chronically ill influencers on social media does not mean you know everything about my experiences. Just because you read my column doesn’t mean you know everything about my experience. Having definitive ideas from one blog post and an infographic is dangerous. I’ve seen the effects firsthand.
I mean, I’ve literally been told that essential oils and a change in diet will help me. For some reason, it seems as though there’s an idea that you’ve done something wrong in your treatment or life to end up where you are, that cutting out garlic and alfalfa sprouts (yes, this is a real thing) will make you have less lupus flares.
I suppose the mystery of autoimmune diseases leads to a jump in home remedies, and some people may find success in them. I’m just saying that the next time I go half blind from a migraine, I won’t be wishing I hadn’t had garlic bread that day.
Quite frankly, it can be more empowering to feel all of your emotions than it is to just put on a brave face and move on.
The truth is, chronic illnesses aren’t bright colors and catchy phrases. They’re blood draws and medications; migraines and nausea; heartbreak and devastation. The realization that your life has been forever altered. They are, in a single word, ugly.
Embracing the ugliness and recognizing the overwhelming despair that often accompany a diagnosis, or a search for one, has helped me be kinder to myself. It is not my fault that my life and illness cannot be packaged neatly and adorned with a catchy caption. I now know that I do not need to make my experiences more digestible to the general public.
This is the ugly truth: Post.