As someone who spends a lot of time in the internet patient advocacy space, I’m constantly seeing stories and symptoms and new meds. These stories inspire me, and give me hope, and allow me to commiserate and ask for advice when I need it. But I think to enjoy getting to know fellow patients, there’s an important disclaimer to anyone new to the space: every patient is different.
Like snowflakes and fingerprints, no two patients with the same disease will experience that disease in the same, exact way –– especially with autoimmune diseases that can attack so many different parts of the body. I’ve talked before about how important it is when you’re sick not to compare yourself to healthy people, but it’s also a good rule of thumb not to compare yourself to other patients, either.
Why? Comparison is the thief of joy, and other platitudes that are true. I spent a week last summer surrounded by fellow IBD patients, and each and every one of us had our own dietary restrictions. Some could eat gluten while others had to steer clear. Some avoided dairy while others tolerated it totally fine. Diet is one of the biggest ways in which patients can differ, so if you meet someone with Crohn’s Disease and want to ask, “Why can’t you eat red meat? My aunt with colitis can and she’s fine,” for the love of God please stop yourself.
But it’s more than just diet –– patients differ in which medicines work for them, and whether or not drinking makes them flare, and how much they can do before their body is running on empty, and about a million other things. Some patients with IBD only experience symptoms in their GI tract. Others will experience any combination of extraintestinal symptoms, from joint pain to hair loss and every unpleasant thing in between. There’s no finite guide that says: here’s your diagnosis, and here’s exactly what you can expect.
I’m definitely guilty of beating myself up for being too fatigued to stay out late when I see other patients doing it, but it’s an important reminder to myself and everyone else that no one’s disease experience is exactly the same. While the other patients I’ve connected with are great are showing their authentic lives, pain and all, social media is still just giving you a little bit of a picture of someone’s life. If you see a fellow patient out having drinks with friends and think, “why can’t I do that?” you might not be seeing the part where they’re in a lot of pain the next day because of it.
At the end of the day, I think social media is an amazing outlet for patients. When I was initially diagnosed I didn’t know a soul in real life who had the same disease as me, and finding people who have the same disease helps immensely. There’s no feeling quite like being understood. But even in those relationships it’s important to resist the urge to compare yourself. When speaking to fellow patients online or in the real world, the biggest thing to remember is to be kind. Listen. Empathize. Don’t question anyone’s choices, and don’t let anyone question yours, because at the end of the day you’re the one that has to live in your body