(As originally published for my column in this month’s IG LIVING)
THERE’S NO shortage of chronic illness patients who are willing to share their real lives on Instagram. There are hashtags for every disease under the sun — even #HospitalGlam for girls looking to prove that even on their worst day, they can still be beautiful. Even so, most of the feed is probably filled with celebrities, old friends from high school and girls who’ve had tummy tucks trying to sell waist trainers.
I try to keep a good balance in my social media accounts from “I’m some- one with a chronic disease that affects every moment of my life” to “I’m someone with a job, a husband and a dog, who is addicted to the thrill of finding a sundress under $11, and who likes to take pictures of food that show I have zero self-control when it comes to portion size.”
This summer, I saw pictures on my feed from people my age who were backpacking across Europe, lying on the beach, going to theme parks and knocking back piña coladas like it was their full-time job. All while I sat on my bed, anchored to my IV pole, knowing there wasn’t a bandage that would fully cover my accessed port well enough to go for a swim. I laid there, exhausted from just carrying my groceries from my car to my front door, knowing I definitely couldn’t hack carrying an overstuffed backpack through Amsterdam.
I tried not to let that completely sour feeling of jealousy sweep over me every time I scrolled through my feed. To be honest, half of the things these people were posting weren’t even things I had any personal desire to do. I didn’t want to jump off a waterfall or go to an Incubus concert. I didn’t want to bleach my hair and then dye it hot pink. I just wanted to feel like I could do these things, if I ever developed the urge.
Our limitations are often magnified when we compare them to those who don’t have medical complications. And it’s hypermagnified when it’s constantly on the screen in front of us. So, I try to remind myself about a few things when the jealousy gets me down:
1. You can’t compare your behind-the- scenes to someone’s highlight reel. Just because you’re seeing friends at concerts rocking out doesn’t mean they’re not feeling a hangover the next morning. And that’s not some- thing they’re going to share on Insta.
Minor Health Update: PORT IS UNACCESSED FOR THE TIME BEING I was on the rise for a while but I took a bit of a tumble the last week or so. I’m on the motherload of #antibiotics for a sinus infection that really took me down. …. #chronicillness #invisibleillnessawareness #invisibleillness #immunedeficiency #dysautonomia #surgery #healthupdate #spoonie
2. Not everything that’s posted is real. I’ll be straight with you. My skin isn’t as flawless as I make it look in pictures. Perfect 365 people! Photoshop can make anyone look stellar. Those circles under my eyes? The chapped lips? The medication bloat in my face? All magically resolved with a few clicks. Nobody is perfect, but on the Internet, we can sure make it look that way.
Recorded my BP/HR for the last three nights. These are all after resting for at least an hour. Taken sitting down. Honestly, besides the weird feeling of tachycardia and sometimes feeling like I’m about to faint I actually feel okay. I’ve been able to exercise each afternoon through it. Guess my beta blockers are as ineffective as I thought? Or do you think my BP would be even worse without it? #POTS #dysautonomia
3. Everyone has their struggles. Your friends might be making their way across the world, but it doesn’t mean they’re not stuck in their own drama. Breakups and breakdowns are rarely played out in social media.
4. You are not on the same timeline. When jealousy arises and I see someone who has gone further in their career or has met their fitness goals, I have to stop, calm myself and remember that nobody has walked in my shoes, and nobody spends their time doing everything I need to do to make my life work. Age, experience, complications — everyone is on their own timeline for personal success.
5. Authenticity is everything. People love model Chrissy Teigen because her social media is full of truth. Body image, self-deprecating humor and openness about issues like postpartum depression are what draw people to her feed. Shame can’t survive being shared. If your struggle is real, share it!
You can always find me sharing the hot mess that is life with primary immunodeficiency at instagram.com/ilana_ jacqueline!