When you’re part of a minority, people expect you to speak on behalf of everyone in that minority. If you speak publicly about your experiences, they expect you to be a good activist, someone to point to and say: “See? If they can do it, so can you!”
But that’s not fair. My experiences with chronic pain are different to someone’s experiences as a wheelchair user; just as my bisexual identity doesn’t mean I know what it’s like to be a cis gay man. Even other people with the same combination of conditions as me have vastly different symptoms, capacities, and coping mechanisms. I don’t need mobility aids and I rarely take bed rest, but I know people who do.
I follow a lot of wonderful chronic illness blogs, like Kate the Almost Great and All That Jazmin. These bloggers are inspirational, and provide tips and routines to manage your pain better. They’re uplifting and helpful, but this blog will never be that. I see people discuss how they stuck to a rigid workout schedule and healthy diet and nearly eliminated their pain altogether. I know I’ll never be able to achieve that. These are real people with real stories, not scammers tricking you into buying their protein shakes. Nonetheless, these bloggers are incredibly resilient and dedicated to their recovery.
I’m not like that. I exercise when it suits me, but I give up too easily. I’m terrible at managing my pain; I lose track of time when knitting until I overexert myself. My diet is pretty terrible, even though I know that eating better would help me in so many ways. It’s never been a goal of mine to be medication-free. I just don’t have the energy to commit to the healthiest lifestyle for me, and that’s ok.
I’m not saying that I’ve given up. It’s important to be healthy no matter what you’re situation. And I’m not trying to put down these other bloggers who should be proud of everything they’ve accomplished. I’m just trying to come to terms with my disability, knowing that expressing the pain I’m in doesn’t make me weak, or that I should count myself lucky that I don’t have it worse. My worth is not determined by how well I can grin and bear it.
When I write about chronic pain, it’s to reach out to people with similar problems and help them feel seen. I’m not offering cures or solutions. I don’t want to be a role model, I just want people who can’t hide their disabilities to know that they’re not alone.
Invisible illnesses are tough. Because of how society treats disabilities, it’s common for people to think people with chronic pain are “faking it” or overreacting. There’s so much pressure to “get better” and try to fit in with everyone else, but the people asserting that don’t understand the pain our bodies put us through every day. We are disabled, despite what imposter syndrome might tell us, and there should be no shame in asking for the care we deserve.
Because our symptoms aren’t visible, we have to be our own advocates. We deal with people doubting our lived experiences, telling us to “just try yoga”, or just not caring. Sorry to anyone looking for an inspirational story, but I’m really just trying to get by in a world that continually tells me my problems don’t exist. I’m not “brave” for simply existing; I’m brave because I refuse to be silent about what I’m going through.