my-illness-and-me

[my-illness-and-me]

offically a high school graduate! first generation high school graduate! woo!

[my-illness-and-me]

My mother: I can't believe my newly 18 year old just bought herself a stuffed animal and baby doll for her birthday Me: Would you rather I have real children, mother?

[my-illness-and-me]

I just unexpectedly lost my medical coverage. Please share, it could lead to my next sale! So I can cover my medical bills.

I sell pins, compression gloves, artist gloves, chest binders, wrist braces, hip braces, hoodies, skorts, compression socks & more!

Store details below!

[my-illness-and-me]

Something I think people who don’t live with chronic illness don’t understand is that there is a big difference between resting to get better and resting to avoid getting worse.

[my-illness-and-me]

Not telling your kid they have a learning disability, chronic illness, mental illness etc. so they can “feel normal” actually does the opposite. They will not feel normal if they do not have the context to understand that their normal will be different from that of their peers.

[my-illness-and-me]

ayo. I found cute compression gear. just thought i'd share

Happy Black History Month!

It costs 0$ to Repost a Black disabled queer small business! It could lead to my next sale.

I sell pins, stickers, compression gloves, artist gloves, binders, hip braces, wrist braces, compression socks, sports bras & more!

[my-illness-and-me]

The thing that abled people who advocate for the disabled community don’t get is that there are times when disabilities/accommodations clash. Horribly.

Like I spent years having to come up with a solution to get therapy dogs into a series of residence halls. Why years? Because we had to decide who got to stay and who got to leave: the people who needed therapy dogs or the people with severe allergies to animals. Who got the alternative housing? 

Things like fidget toys might seem great for some disabled people but having them in the room could be distracting/overstimulating for others. The same goes with stimming. It can’t be helped but neither can the anxiety that another person in the room feels as they watch/hear it. Additionally, something like a weighted blanket might immediately calm one kid down and send the other one into a panic attack due to the claustrophobia it causes. (*Points to myself*)

Every Metro bus in New York City has a series of seats at the front that can be lifted up to accommodate people in wheelchairs but if I’m in one of those spots then someone with a cane/walker has to journey even further to sit down.

The flashing lights of a fire alarm are there to help deaf/hearing impaired but if they’re not properly timed, they can also cause a person to have a seizure.

The worst part about all of these is that there is rarely a concrete solution that makes everyone happy/safe. And I’m not here to offer any because I don’t know them. I’m just here to remind you all that as you’re taking your education/health classes, as you’re reading your textbooks, as you’re preparing to go be an advocate, just remember that there is rarely ever such a thing as a one-size-fits-all solution to advocacy and that something you do that can help one disabled person might actually hinder another.

Food for thought.

[my-illness-and-me]

Shoutout to disabled people whose pain management can’t make up for their pain level. Shoutout to disabled people who can’t afford to treat it adequately. Shoutout to disabled people who don’t have much pain management, and not because they don’t have chronic pain

[my-illness-and-me]

as a crutches user i'd like to shout out to people who use other sorts of disability aids! people who use AFOs, oxygen tanks and concentrators, braces and compression garments, continuous glucose monitors and insulin pumps, a white cane, AAC devices, any type of feeding tube, hearing aids, ventilators, a tracheotomy tube, a hoist to transfer, commodes, incontinence pads, adaptive cutlery and kitchenware, rails, braille displays to name a few! there's so many disability aids out there in the word to help people live their lives and i wish for everyone to have access to them whenever they need

[my-illness-and-me]

time of year i remind every cane user to get an ice pick so you dont fall and die

[my-illness-and-me]

[my-illness-and-me]

Reminder that people with invisible disabilities aren't the only ones who get ignored and accused of lying by doctors. People with visible and severe, even deadly disabilities aren't automatically believed. Some severely and visibly disabled people die because doctors won't believe that they're really sick, accuse them of faking or exaggerating and deny them treatment. This kind of treatment isn't unique to any one kind of disability, it's something that most or perhaps even all of us have faced at one point or another.

[my-illness-and-me]

My mother called me feather child. I was light, too soft for this world, drifting where the wind took me. She said I never quite settled, always floating just out of reach, a weightless thing in a world too heavy.

My father called me mirror child. I reflected everything but held nothing of my own. His eyes saw the echoes of him in me, but only in pieces, never whole. I was surface, shining, but hollow behind the glass.

My sister called me shadow child. Always there but never noticed, moving along walls, blending into corners. I was the quiet between her words, the space where no one thought to look.

My lover called me phantom child. A presence you could feel but not hold, a touch that never stayed. I was a fleeting thing—here, then gone, more memory than moment.

I call myself unfinished child. Still waiting to take shape, still learning how to be solid in a world that wants me defined.

[my-illness-and-me]

I would like to see more people talk about how jobs treat disabled employees.

I used to prep, wash dishes, and cook at mellow mushroom. I had chronic pain that wasn't NEARLY as bad as it is today, but it was still very debilitating. I told my employer "i cannot stand more than 4 to 6 hours. I CANNOT do shifts longer than this due to my illness." And even though i made my boundaries VERY clear, everyday i worked it was 8 hours at the least and 10 or 12 at the most. I would go up to my manager and say "look i really need to leave, my shift is over, my chronic pain is killing me." And he'd say "we really need to here, you HAVE to push through." And so i did, and after one, ONE month of that job my crps got incredibly worse to the point where i could no longer walk my dog around the block which was .5 miles. I quit, and that was FOUR years ago, and ever since that day I HAVE BEEN BEDRIDDEN AND HAVE TO USE A WHEELCHAIR. It is my biggest regret in life.

My best friend who has seen my whole journey has recently developed undiagnosed chronic pain, and she is in the EXACT same scenario i was 4 years ago. Busting her ass at a pizza place with extreme pain that hurts her so much she tells me "im in so much pain i don't even feel like a person." She doesn't feel LUCID. And her manager and coworkers are saying the same thing "if you don't help us you will let us down, we'll be in the shit."

That job thats hurting you isn't fucking worth it. I promise you no money is worth losing all your physical abilities and never getting them back. Your coworkers and boss do not give a shit about you, so don't you dare suffer for them. They will never understand your struggle and they will never try. They truly think being understaffed is worse than whatever pain you experience. They would rather you permanently damage yourself than inconvenience them. FUCK THEM. DON'T FUCKING DO IT!

[my-illness-and-me]

Artwork by Joyfulsmolthings. I changed the words.

[my-illness-and-me]

The stark, piercing clarity that washes over you when you confront your mental health struggles is that peace will always be a battle. I don’t think those untouched by this struggle can grasp what it means to surrender to the reality that your mind isn’t just yours anymore. You navigate life alongside a shadow that will linger until your last breath.

[my-illness-and-me]

Dear Friend,

I’ve been meaning to write this for a while now. It’s hard to put into words what it feels like to live inside a body that won’t let you forget it, even for a moment. Chronic pain is something I don’t talk about often, mostly because it feels invisible to everyone else. I can move through the day, smile through conversations, and still—beneath it all—there's this constant hum, like a shadow that never leaves.

It’s not the kind of pain that screams. That kind of pain gets attention, a solution. No, this pain is quieter. It lingers. Sometimes it feels like an ache in my bones, sometimes a stabbing sensation out of nowhere. There are days it’s almost bearable, like background noise I’ve learned to ignore, and then there are days where it’s all I can hear.

What’s hardest to explain is how exhausting it is. Pain doesn’t just hurt. It drains you. It’s like trying to live your life while carrying something heavy, all the time, with no chance to set it down. And there’s no telling when it will get worse, or better, or stay exactly the same. It makes planning things difficult, even simple things. Sometimes, I cancel plans because I can’t move the way I need to, or I’m so tired from managing the pain that I can’t imagine sitting through a conversation.

I know it can seem like I’m distant or distracted. I don’t want you to think I don’t care or that I’m not present, but honestly, there are times when being in my body takes up so much of my attention, there’s nothing left to give. It’s hard to explain this to people who haven’t experienced it. Pain becomes a part of your life, but not in a way that you can see. If I could show it, like a bruise or a broken bone, maybe it would make more sense.

What makes it harder is the silence. Chronic pain isn’t something people talk about much, and sometimes I feel like if I bring it up, I’m being dramatic or asking for sympathy. But really, I’m just trying to be honest with myself and with you. It’s not about wanting pity. It’s about trying to make sense of this life, to explain why some days I’m not as present, or why I seem like I’m carrying something unseen. Because I am.

I’ve learned to adapt in ways I didn’t think were possible. I’ve learned to listen to my body, to accept that some days will be harder than others. I’ve learned that healing isn’t always a cure, but sometimes just a way of coping better. But it’s also lonely, in a way I didn’t expect. When the world keeps moving around you, and you’re trying to keep up through this fog of pain, it feels isolating.

I want you to know that even if I don’t always talk about it, it’s there. And when I cancel plans or go quiet for a bit, it’s not you—it’s this thing that has become part of my life. I’m doing my best, and some days are better than others. But I appreciate your patience, your understanding, more than I can say.

Thank you for being there, even when I can’t always explain what’s going on inside me.

With love, Aaron