Chronic illness has been a part of my experience since my very first breath.
I wasn't actually AWARE that this was the case until much, much later in my life - instead I just thought I was weaker than everyone else, too needy and that any illness I had was my own fault.
Dealing with being sick all the time, not being properly diagnosed, being gas-lit by health care providers, being denied care due to my physical shape/size, having my body be the reason I couldn't keep up/was kept out of spaces that would have helped me move forward professionally and socially - it's been a lot.
Also, being an 'online presence' I've received a LOT of comments ranging from genuine concern, to concern trolling to outright questioning of my integrity/mental health due to the way my body presents. I've had people ask me incredibly personal, intrusive questions about my personal life, or tell me that I'm 'really sick and need help' while knowing nothing about me and crossing all personal boundaries simply because they feel they have the right to - because I don't 'look healthy' and therefore am less than deserving of respect.
I've experienced first hand the toxic idea that we are all perfectly capable of existing in bodies that not only are healthy but that also LOOK 'healthy' based on the very narrow parameters set by society, and therefore if you don't 'look healthy' this MUST mean you're CHOOSING to do something that's bad for you, that you're weak, that you're mentally ill, that you're lying and untrustworthy, that you're not worthy of living your life or even capable of doing a job - even if that job is unrelated to physical health.
I've experienced body shaming that isn't just something that hurts our feelings, but the kind that has real world impact. I've watched as people used me as a screen to process their own feelings of insecurity, not knowing, and fear of the unknown onto me - telling me how to fix myself and what I could be doing to be better - so that they don't have to look at the reality that we don't have perfect control.
Being ill makes you a volatile presence because it brings up SO much for others - and it shines a light on the very real and very NORMALIZED discrimination that exists in our society.
I'm going to be talking about these things today not to garner sympathy, but because I know SO many out there who are dealing with chronic illness have had similar experiences.
I'm wanting today to be a voice for those who are too tired, hurt, overwhelmed or simply just don't have the words to express what it's like to be sick, what's ACTUALLY helpful if one want to be helpful, and what we need in terms of societal reform - in hopes that I can ease the burden of expressing these things for those who can't right now.
I also want to educate those who are not chronically ill on what a respectful way to interact with chronically ill people is. Because there's so much social conditioning and personal demon facing that needs to be overcome if we REALLY want to be supportive for those in our lives or out there on the internet who suffer.
This is a big one, and I'm hoping that it can be a resource for anyone out there who needs it.
<3
Links:
https://mastcell360.com/
https://www.instagram.com/everydaydetox/
https://drbeckycampbell.com/
A quick rundown of why my gut is how it is and why I can't just eat more
https://www.instagram.com/reel/CmZoBVJgP_K/?igshid=Yzg5MTU1MDY=
https://www.instagram.com/reel/CmZoBVJgP_K/?igshid=Yzg5MTU1MDY=
Also understand that I don't have tubes because I have chosen to manage my symptoms in other ways.
<3
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