chronically willed

personal essays and visuals about chronic illness, learning to rest, and rebuilding on my own terms. come on in :)

[chronicallywilled]

Chronic illness has asked me to relearn my body, my pace, and my expectations.

I find hope in the idea that I’m in a “during” phase — that my old self isn’t gone, and my current self isn’t a finished product.

If you’re there too, you’re welcome to linger.

[nimandmossy]

Ok but can we talk about the loneliness that comes with being chronically ill? If you’re not able to work or go to events, there’s so much time spent by yourself.

It feels like Im a zoo animal with no enrichment or friends, just me staring out the glass

[chronicallywilled]

it’s a type of loneliness that i have a hard time explaining to my partner and my friends

[battywitch]

One thing I don't see mentioned as often as I would expect (for chronically ill folks) is how frustrating and exhausting it is to have to try to figure out how ignorant you have to act (about your body, conditions, medications and other treatment options, diagnostics, etc) with each new doctor/nurse/etc you interact with, so you don't accidentally bruise their ego and get fucked over by understanding something better than they do, so you don't come across as self-diagnosing with "Dr. Google," get brushed off as "just" having anxiety, get labeled drug-seeking or a hypochondriac, etc.

[chronicallywilled]

it gets to a point where i feel like i’m gentle parenting my own care team

[didoey]

The hope will still be there after you lose it. The hope will still be there after you lose it, right where you left it. You can panic and cry and scream and the world can collapse in on you and you can spiral out of control. But it'll still be right there where it fell out of your hands. You'll never drop it enough times to break it. No matter what, it's still there.

[deadshirtt-deactivated20140420]

my hobbies include sleeping and feeling like i’ve never slept

[chronicallywilled]

i’m realizing that i know how to defend my medical history better than i know how to rest.

[chronicallywilled]

in the midst of illness and grief and fear, we are expected to produce our own medical case studies in real time.

[chronicallywilled]

https://chronicallywilled.etsy.com/listing/4456382937

just something i made, in case it’s helpful for anyone!

minimal effort needed to track symptoms and side effects each day, then just sum your totals from the week in the weekly review. for example, a week where every day was a 1/5 for energy would give you a total energy level of 7 for the week.

over time, you can see how a new treatment or medication is actually working for you and be better prepared to discuss with your doctor.

the full thing is on my etsy, linked here. check it out :)

[annabookchase]

i lost my job a few weeks ago due to disability, so i’ve been trying to build work that fits with my body’s reality instead of fighting it.

this little project is part of that.

if it helps you, that’s exactly what i’m hoping for.

if all you can do is reblog, that helps more than you know.

take care,

-Kara

[chronicallywilled]

just bumping this up :)

[asexual-amanita]

If you are one of the people who thinks that chronically ill people who are housebound or can’t work are ‘lucky’ because they get to ‘have fun all day without worrying about responsibilities.”

I fear you have severely missed the point.

[annabookchase]

Hey friends— I don’t usually post personal things here, but I need a little help for the next week.

I lost my job two weeks ago due to a disability-related issue. My unemployment benefits were just approved and I’ll receive weekly payments soon, but there’s a short gap I need to close before Sat, Feb 21 to prevent my car from being repossessed.

I need to cover $639 total. I’m paying $319 from my unemployment this weekend and working toward the remaining amount for next week.

If anyone is able to help bridge that gap — even just a few dollars — it would mean the world to me.

If you would prefer to support by shopping, my Etsy can be found here: https://chronicallywilled.etsy.com

If there are any requests for digital products I can make (templates, lockscreens, etc) I am more than happy to do that.

Venmo: @kara-gw (phone number ends in 2791 for verification)

CashApp: $karadubz

Reblogs are genuinely helpful, too. Thank you all so much. ❤️

[chronicallywilled]

https://chronicallywilled.etsy.com/listing/4456382937

just something i made, in case it’s helpful for anyone!

minimal effort needed to track symptoms and side effects each day, then just sum your totals from the week in the weekly review. for example, a week where every day was a 1/5 for energy would give you a total energy level of 7 for the week.

over time, you can see how a new treatment or medication is actually working for you and be better prepared to discuss with your doctor.

the full thing is on my etsy, linked here. check it out :)

[annabookchase]

i lost my job a few weeks ago due to disability, so i’ve been trying to build work that fits with my body’s reality instead of fighting it.

this little project is part of that.

if it helps you, that’s exactly what i’m hoping for.

if all you can do is reblog, that helps more than you know.

take care,

-Kara

[chronicallywilled]

https://chronicallywilled.etsy.com/listing/4456382937

just something i made, in case it’s helpful for anyone!

minimal effort needed to track symptoms and side effects each day, then just sum your totals from the week in the weekly review. for example, a week where every day was a 1/5 for energy would give you a total energy level of 7 for the week.

over time, you can see how a new treatment or medication is actually working for you and be better prepared to discuss with your doctor.

the full thing is on my etsy, linked here. check it out :)

[traumasurvivors]

If your trauma responses got louder once you were safe, that doesn’t mean you’re doing recovery wrong.

It often means your body finally felt allowed to speak.

[myjourneywithfnd]

Little things I do to help my body and to keep it more comfortable.

Showering seated.

Not too much pressure on nutritions! Just getting food in, in any way, shape or form.

Trying not to have more than two (hospital) appointments a week!

A few nice/fancy looking pyjama's and or tracksuits (to still feel a little good about myself)

Light stretches (mostly in bed)

A weigthed blanket for some pressure (my muscles are thankful for this)

Feel free to add to this

[chronicallywilled]

i second all of these!

if you have access to a bathtub, it can be really nice to take an epsom salt bath for nerve and muscle pain. i often just wash my hair in the bath, as well. just make sure to be drinking water and/or electrolytes if heat can be a trigger for you.

[borderlinereminders]

Reminder: Feeling better for a while doesn’t mean you were “never really struggling.”

[nightshadewine]

why are people so keen to attribute the cause of symptoms to something that isn't chronic illness? this thing hurts, therefore i must have been sitting wrong. i'm extra tired today, so i must have slept poorly. my legs are weaker today so i mustn't have eaten enough. it's like if there's a sufficient banal explanation, we don't need to worry about the sinister unpredictability of a chronic illness. if there's a normal cause, then it might go away soon (as long as i act correctly)

[chronicallywilled]

i catch myself thinking this way all the time. maybe it’s easier for me to assume responsibility for my symptoms than to grapple with the fact that i am not in control?

[chronicallydiana]

life is still worth living

Disabled. Chronically ill. In pain daily. Still living my life out loud. Joy isn’t cancelled just because my body is unreliable.

[chronicallywilled]

yes!! and always remember that joy is an act of resistance