| By Lauren Taglienti |
There's a certain pressure I feel as someone with chronic illnesses and disabilities to be the voice of managing pain. I feel like I have to be the steady strait that underlines the highs and overhangs the lows. I also like to keep things positive, and I think a combination of all that shows in my writing. But upon reading Samantha Irby's essay collection wow, no thank you, I realized how honest her voice is, albeit perhaps a bit hyperbolic (aren't we all) and how aspirational mine can be.
I tend to write about myself when I'm either at my best or at my worst, ironically averaging out to that middle line between the highs and the lows, the mountains and valleys, but it still feels like something is missing, like I'm holding back at times because I feel like if I have messy days, as Samantha Irby openly talks about, I can't tell anyone about them. That would mean I'm not a "good" disabled or chronically ill person (whatever that means) and that I should always be doing something to improve my mental, physical, or spiritual health and wellness. Living that life is really taxing. Some days I don't want to go to the gym. Some days I don't even want to get out of bed.
I want to sleep late but then get anxiety about sleeping late because it's the day and I should be productive during the day as to not "waste" it. I feel like I should have the abs I had in the beginning of lockdown when I worked out for hours a day in a desperate attempt to reduce my stress. I feel like I should have more salad and whole foods, even though I'm craving pasta, because pasta increases inflammation in the body, and my body simply can't do inflammation because of my endometriosis and increased risk of stroke from other conditions. But sometimes I just want the damn bowl of pasta. Is that too much to ask?
Am I intentionally hurting myself if I have a slice of cake every now and then? It's not my intention, but I will be extremely bloated and irritable afterwards. All I wanted to do was enjoy the sweetness, and instead my body turns that sweetness into a bitter, sour painful bloating. If I talk about that, though, because I'm not "perfectly" doing everything I can to reduce my symptoms, I feel like I'm a bad example. I wouldn't think my best friend is a bad example if she did that, though. I'd say something like, "Yes, bitch, you eat that cake. You deserve it." But because I have multiple chronic illnesses, I feel like I need to be the inspirational one overcoming everything. Why can't I just eat the damn cake?
Something that I gleaned from reading Emily Ladau's Demystifying Disability is that there's a genre of media that is essentially "inspiration porn." The viewers are often non-disabled people watching disabled people walk for the first time, hear for the first time, graduate from high school, etc. Hell, I was that kid who walked across the high school graduation stage that people—at least those who knew my story—cheered extra loud for because my story inspired them.
I feel the need to cater to that audience, like if I'm not the inspiring disabled person, then nobody will like me. So part of me feels invalid if I don't live up to that standard of what those viewers deem inspirational.
At the end of the day, my goal really is to inspire people, so I feel like a fraud when I'm doing something that's not grandiosely overcoming an obstacle or solving the climate crisis or simply eating healthily: something that isn't what I think others will think is perfect. Sometimes I want to binge watch Selling Sunset and eat pasta and cake. Am I sorry if that's not inspiring enough for you? Yes, but I don't think I should be. I think being honest about the flaws in my self-care and symptom managing is more helpful than pretending like I have everything figured out because I don't, and no one does.
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