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.
13 responses to “I’m Chronically Ill, Not an Inspiration”
It’s very frustrating to receive unsolicited advice from others regarding your chronic condition. Each person’s experience is individual. That’s great that you are expressing how you feel to connect with others in similar situations.
Everyone’s experience is different when dealing with any kind of illness. Great post to read.
I have a family member who has been dealing with chronic pain for the last few years and still no answers but she is getting better. Hope it gets better for you soon!
You can say that again. Chronically ill or otherwise disabled people are just people not a source of inspiration. I think people who write and say ‘ you motivate me, you make me think if you can do it I can too’ are just wrong. We do all life for ourselves not to be something for anyone. I have back issues after trauma (I had it broken years back) and there are still things I have to do to maintain ‘normal’ life. I hate it when people way something about my journey to regular mobility and movement inspiring.
I so feel you! I was very sick a couple of years ago and had to endure the worst comments. People just blabber some nonsense without thinking. All the best to you!
I totally understand, because I am in a similar situation. I have lots of joint problems and chronic pain because of those. Some people will never understand, and others will always be jealous. Just ignore the negative comments.
It’s hard enough to cope with what you need to do daily let alone be an inspiration to others. We are all unique so our experiences with conditions will differ.
Thanks for this very raw and unfiltered blog post. I totally get what you’re saying. I’ve come to the same point in my life where im just trying to be real and not exactly inspirational.
I understand your thoughts and you are right. Each individual is different including our health. That is why it is advisable to seek professional advices, and not from random people, even us here on the internet. What we read here is might be helpful guide, but not 100% the solution.
Thanks so much for sharing your own experiences here with us. Everyone of each is unique, health is important to each of us. Blogging is my way to express my life. Stay happy always, life is short, we have to motivate & inspire own self ya 🙂 cheers Siennylovesdrawing
Thank you for sharing your experience with us through this post. I had been though a difficult time and chronic pain few years back and i found it worked best when i ignored the negative comments.
It sucks doesn’t it. And when people say “I don’t know how you do it” – well what other choice is there.
Exactly. I’m not doing anything particularly brave, just existing.