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What You Need to Remember as You Scroll Through Social Media If You're Ill

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Hey you, fellow chronic illness warrior, scrolling through your Facebook or Instagram feed and seeing all your friends’ accomplishments and weighing them against your own — feeling as if you’re coming up empty. Stop what you’re doing. Stop comparing your life experience against someone else’s. I promise you that even the most perfect person out there has struggled, he or she just hasn’t posted pictures of sobbing, or statuses about their deepest and darkest moments.

One of my favorite quotes from The Latest Kate (as she is known on Tumblr, Facebook, Instagram, etc.) is “your struggle is not an indication of failure.” Remember that. Not everyone shares their struggle, but everyone struggles. It is brave to share that your life is not perfect – though it may not be as popular as your cousin’s feed about which winery she and her amazing husband are visiting along the West Coast this weekend, it’s just as true and meaningful. You may wonder how one woman could be so perfectly pretty and just stunning, but she may be wondering the same thing about you. Just because it’s not talked about does not mean it’s not happening. Just because your post of chamomile tea does not acquire as many likes as your college acquaintance’s business trip to the Bahamas does not mean that you are not equally as amazing or awe-inspiring.

If you’re anything like me, you’ve noticed that since your onset of symptoms and/or diagnoses, people have been dropping out of your life, slowly but surely. This does not equate to you being any of the following:

1. Debbie Downer

2. Helpless

3. Hopeless

4. Flakey

5. Feeling Like You Deserve to Struggles

6. Boring

7. Depressing

8. A Bad Friend, Sister, Daughter, Etc.

9. A Disappointment

10. A Victim

Why do people love to throw this one around so much? Especially with mental illness?! No one ever came up to my father during his battle with lung cancer and said, “Hey Tim, look on the bright side, you’ve lost a bunch of weight without even trying. Don’t be a victim, buddy.”

Yet, people have been more than comfortable saying to me, “Kelsey, things wouldn’t be so bad if you looked at them in a different light, your dad is in a better place now. Life goes on and so must you. Sometimes you need to just move on.” Another one I heard from family and friends over the years, “I don’t believe in depression, you know? Just like, cheer up. Right?”…And of course, every exhausting debate about medication.

As far as physical health, because I have inflammatory bowel disease, which resulted in needing to have most of my colon removed in my early 20s, people are not shy to weigh in on that either. My former best friend was a vegetarian — always pushing veggies my way, even though I had made it abundantly clear that raw vegetables (and many cooked ones too) did more harm than good with my new digestive system. There were a select few vegetables I could indulge in, but for the rest of my nutrition needs I had come to rely on smoothies and supplements over risking another intestinal obstruction. I had a complicated surgery and lost many friends when I spent months in the hospital.

When I finally did go out and see those friends, I had lost many pounds and relied on a PICC line for most of my hydration because of a poorly placed temporary ileostomy. But I hadn’t seen them in months. It had been a really tough time, and it was a collective birthday party for three of my closest friends, and we were going on a modest lake cruise. In my mind, the event had “positive experience” written all over it. I thought, “It’ll remind me why I’ve been fighting so hard for my life, it’ll be so rewarding to see everyone again!”

It had been over five months since my last surgery and the feedback I received was less than encouraging. I had one friend who insisted that I looked fabulous, even though I was bony, pale, and had enormous bags under my eyes. At that same event, I had an acquaintance say, “Kelsey, you’re here!” I responded, “Yep, I’m alive, can you believe it?!” To which he replied, “Yes, alive and drinking, I’m sure your doctors are really happy about that.” My jaw may have actually hit the floor, I’m not sure. In my mind, I had pushed him off the dock and was handing my IV bag to my tallest friend, saying, “Here. Hold this,” as I jousted him off the dock and kept him from climbing back up with my portable IV pole. A satisfying fantasy, but too violent for real life actions. In reality, I just ran to my other friend crying about it.

Years after my final surgery, I was still having issues with food. First of all, I had to relearn which foods upset me, not to mention my own eating disordered past looming over every bite I took. Then health became trendy. Coconut water tripled in price and Whole Foods employees far and wide were begging me to drop gluten. A former friend gave me a speech, “Kelsey! I don’t understand what you don’t understand! Your stomach hurts. You eat so poorly!” I’m mincing words here, suffice it to say I got a lot of diet advice from some very rude and pushy vegans, vegetarians, and paleo followers. They were so excited to tell me their miracle cure, they forgot I had feelings — and an oversized sensitivity chip.

Unfortunately, their words have stuck with me, but it’s when you give them power that you begin to lose yourself in all the criticism and judgment. You need not thank these people for their sage advice. They do not deserve a second thought, they have not earned the right to be that critical voice in your head. Knock them off their pedestals, not by lashing out or seeking revenge, but by carrying on as if they didn’t say a damn thing. Stay true to what is in your heart, honor that. No one knows what it means to carry your burden but you. You may not have a house, husband, or child to flaunt at this point, but you have your life. It may not feel like much, but it is everything. You are your biggest achievement. Keep fighting for you. Right now it may feel trivial, but your future self will thank you. The people out there who have not fought for their lives, those who have judged you (but not struggled with their own loss, illness, or heartbreak), have absolutely no idea how much we, the mighty, have achieved.

Originally published: June 24, 2018
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