Fern

-21 years old- queer- they/them- chronically ill/disabled- artist/writer-

[ferns-musings]

It’s frustrating when your body can’t handle the amount of activity you want or need to do- and I’m not talking about exercise, I’m talking about activities as in the things you do everyday: showering, hobbies, work school, chores, hanging out with friends, watching tv, etc. Now just imagine not being able to do all of those things, even if you absolutely need to, imagine having to pick and choose every single day what you can do, and what is worth pushing past your symptoms for. Will I shower or do the dishes today? Cook dinner or do a hobby I haven’t been able to get to in a week? Rest or ignore the symptoms knowing I will feel worse later if I do so? It may seem like a silly, inconvenient, even stupid way of doing things to you, but to me this is my everyday life, if I do not make these wagers I will suffer for it, and oftentimes I will still suffer for it despite these sacrifices and my best efforts.

[ferns-musings]

3/18/26

I think something finally clicked in my brain, I’ve been going about this past year of unemployment as if I’m abled bodied, sure I have had dozens of doctors appointments, med changes, symptoms, and flare days, but it’d never really registered when it comes to what I spend my time doing that I am not able bodied.

I was reading Alice Wongs ‘Year of the Tiger’, her memoir, and she said something about writing. I can’t remember the exact quote, but it was basically saying not to compare your writing ‘practice’ to an abled bodied persons writing practice. That really stuck with me in particular because I am a writer, and I love it, yet because of my disabilities I find it nearly impossible to write consistently. I’ve realized that that’s okay, but because of our society’s productive narrative I’ve been stuck at war with myself for the past year.

I’ve been attempting to build up a portfolio, semi successfully, and throughout it I’ve only really been able to work on it when I ‘want’ to because of my AuDHD/chronic fatigue. It’s impossible for me to get the executive functioning to work on things when it feels hard or when I’m simply not interested (thank you, dopamine/novelty loving brain), but that’s okay. I’ve tried schedules, I never stick to them, I’ve tried reminders and checklists, I never complete it, and through it all writing had become unenjoyable because the outside world was telling me how I should and shouldn’t go about it all.

I think this is one of the many ways the ableism lives in our society, and how it even affects non-disabled people. This ‘productivity proves your worth’ is harmful, and doubly so to disabled folks. Most of us were raised on this notion as well, and when it’s grown up with you it’s even harder to steer away from that mindset.

[ferns-musings]

3/6/26

I don't have a lot of motivation these days, and I could attribute that to my ADHD, but I also know it's because I don't have a solid routine in place, nothing that holds me accountable, and that's hard for me. I'm trying to find ways to work with my brain, ways around this mindset, but it's tricky. It feels like all my drive has been sucked out of me, nowhere to be found, yet everyone around me is doing their own things, and I'm just stuck here in waiting mode, not even knowing what I'm waiting for. I'm aware this is not a great place to be; it's as if I'm waiting for something big to happen, some life-changing accident to get me back into gear, but I can't wait on some outside factor. I both know this and still have no drive to make any changes. Internally, I want to change, but I just don't know how.

I've been dealing with health things, specifically POTS and medication side effects that I won't fully get into because I feel like I'm constantly updating everyone in my life about what's been happening, and I just want to delete it from my brain. This definitely contributes to my worsening mental health and lack of motivation, but it's all factors that I can't change right at this moment, and it makes me feel a bit hopeless.

[ferns-musings]

Medical Burnout

I’m burnt out, sick of doctors and symptoms and medications. It’s so hard when it controls your life, but at the same time I’m actively fighting for it not to control my life, it’s like tug of war, back and forth, back and forth. Sometimes I’m fine, and then suddenly it sneaks up on me, the helplessness, the anger, grief, sadness.

[ferns-musings]

2/7/26

I decided to clean out one of the closets in my room (its pretty small and is more meant to just hang clothes) and create a little sensory cave. When I'm overstimulated or in a shutdown I find enclosed spaces helpful, and while my bedroom is small its not enough, so I've in the past built forts, but they're annoying to build most of the time and I can't keep them up, so closet cave it is (insert witty 'I'm in the closet' joke). I was debating before building it to get some room divider curtains/curtain rails instead but those are expensive and I don't have the money so I decided to use what I have on hand. In the future I would like to buy some cushion or small floor mattress because sitting on the ground for a long time hurts but for the time being a blanket will suffice. I find it hard to let myself do stuff like this and give myself the accommodations I need without worrying what others will think, but this is definitely a step in the right direction.

[insidestory1]

It's very harsh that stress is one of the biggest causes of ill-health, and at the same time the iller you are the more stressful life gets.

[ferns-musings]

2/6/26

My SSDI and SSI applications were denied, after nearly a year of waiting. I'm going to appeal it but I don't have hope its going to be approved. I'm frustrated, I didn't have a lot of hope for it to begin with but still seeing the denial is like a slap in the face. I don't honestly know what I'll do if at the end of this all if I'm denied completely and have to start the whole process over again, I'm trying not to think down that road. All I can think of is if I was approved what my life would look like, what a weight off my shoulders it would be. It really sucks, but I also expected it.

[ferns-musings]

2/5/26

I’m in autistic burnout, I’ve had four meltdowns since Sunday when I usually have once a month, and I’ve just overall been overstimulated and down. It’s hard not to hate my brain when stuff like this happens, hard not to let the internalized ableism win and just hating myself for feeling like this. I get so much alone time during the week yet somehow it doesn’t feel like enough, and I’m lucky that I don’t work but then I also feel like I have ‘no reason’ to be burnt out, even though autistic burnout is different than occupational burnout. I wish I lived alone but at the same time I need support, yet it’s not like I’m getting much now even when I live with people. Hell I don’t even know what support I need, and I don’t know how to ask for it either. My brain is telling me to fix this but there is no easy solution, I need a plan because without one I feel like I’m floating aimlessly with no end in sight, and I feel hopeless.

[ferns-musings]

2/2/26

I have a psychiatrist appointment this Thursday (the 5th) to talk about ADHD med stuff. I'm hoping the next med I try won't mess with my blood pressure, like really hoping it doesn't. I'm going to wait another week though to start anything because I'm waiting for my body to adjust after going down on that BP med I tried to up for ADHD.

I finished a book called 'Sick Kids in Love' by Hannah Moskowitz, and oh my god I loved it. Its about two teens with chronic illnesses falling in love, and the author is chronically ill and you can tell by the writing, its relatable and sweet and also heartbreaking all in one and I would recommend it if you're in an okay spot mentally because a decent amount of it is set in the hospital and they discuss things that may trigger you if you have gone through medical trauma.

[bigskycastle]

old magic

[ferns-musings]

Advocacy, appointments, and trauma

Can we just talk about how frustrating and annoying it is advocating for yourself constantly? Like for example I went to pick up meds from my pharmacy and I swear every time I go now there's an issue with billing and insurance stuff and copays, and I have to tell the pharmacist "hey you know I'm not actually supposed to have a copay on that" and they always look frustrated with me like bro why are you mad? I'm mad because I have to tell you this every time, and I know they're busy and overworked but like don't get frustrated with me for it.

Its always the little things that pile up, and sure the gaslighting by doctors in appointments and over the phone is bad but the little things? Yeah those hurt too, and its so hard because I will be doing this for the rest of my life, its never-ending, and its burning me out but I can't just take a step back from my health like that.

Part of me also wishes I could just stop going to appointments because I am so sick of the anxiety and trauma that is brought up from them, that's not even touching on the trauma that you can get from ignorant doctors, it really can mess with your head. I see so many different specialists, and some I have phased out of because I don't need to see them anymore, but others I can't just do that with, especially because I'm in the process of applying for disability and they need those updates and medical record trail. Its a constant exposure to bad memories, and it fucking sucks because I'll never truly escape hospitals and doctors offices.

[ferns-musings]

1/28/26

I'm going to a disability support group later tonight, this is my first time ever doing something like that so I'm really nervous. Its over zoom (although its technically a hybrid event) and its through a LGBTQ+ organization. I'm worried, for some reason, that I won't be able to relate to others, I guess part of me still questions myself and if I'm faking or something. I probably won't talk a ton this first time going, and hopefully I like it and will continue to go, maybe in person sometime too. I'm also worried I just won't like it, but I guess since its over zoom I can always leave whenever, something my therapist pointed out to me yesterday when I brought it up.

In other news a med I'm on for hyper-POTS (that I upped to help with my ADHD) was causing me to be anxious, and kind of feel like I was having a POTS episode, turns out my blood pressure was low. I went back down to my original dose that was just helping with my hyper-POTS, but I'm kind of disappointed because if I go on any other ADHD med besides this one and one other one they all have the chance to raise my blood pressure which is the exact opposite of what I want. I've gotten to a point where I don't want to be unmedicated for my ADHD, its too hard, I get stuck in ADHD-paralysis for hours and have no motivation and my hobbies don't feel enjoyable and I can't stay focused on something for more than 20 minutes at a time, plus I get really impulsive. Overall I think this is because I'm not working, I don't have a concrete schedule and I have little to no outside support regarding getting tasks done. I also should note I'm really sensitive to stimulant ADHD meds and can't be on them because of my POTS, so I've been working with a psychiatrist and trying some non-stimulant options.

The issue is its not like the ones I've tried haven't helped my ADHD, they've just made me anxious and affected my POTS too much; I'm really sensitive to medications in general so finding the right treatment plan for my health issues has been hard these past couple of years.

I have an appointment tomorrow with someone from the adult pulmonology at my hospital to discuss stuff about switching over to the adult side for my cystic fibrosis care. Its over zoom luckily but I don't really know what to expect from it so I'm anxious and also I keep forgetting I have it.

1/30/26

Turns out the disability support group I was going to go to wasn't having it on the 28th because the center had an open house, something I didn't figure out until after I had tried to join the google meet. This is the second time something like this has happened, the first time I went in person and it had been canceled. Its obviously not their fault but it makes me wonder if this is a sign I shouldn't go, though I try to not let that possibility stop me from trying again.

I've been in a crash/flare these past couple of days and haven't really done much, I think the emotional tool of trying to go to that support group didn't help anything because I was really nervous for it and my heart was racing from the anxiety for like an hour after.

I had that appointment with my new doctor from adult pulmonology and I like her, I also got to meet the social worker and she was nice too. They both just asked me some question and generally explained how it worked as compared to pediatric pulmonology. I wasn't really anxious for it surprisingly, I trust cystic fibrosis doctors more than other doctors, I haven't really had a bad experience with one that I remember so that helps.

[sockatoothewafflebird]

random thought. we need more fanfics where our favorite characters are disabled in some way shape or form. literally even just something as mundane as chronic migraines or joint pain. and yes i DO want to write this and yes i WILL write my blorbos like this myself... the next time i'm hyperfixated enough to write and post fics about something.... Ahem.... but WE NEED MORE DISABILITY REP IN FICS AND IN FANDOM!!!!!

[fibromyalgicaf]

Hey btw... You don't need to toughen up; living with chronic illness is hard.

[rimonoroni2]

there should be a such thing as a medical detective. you should be able to hire a doctor to figure out what the fuck is going on with you come hell or high water by consulting whatever specialists they can get their hands on, connecting your constellation of symptoms, etc, instead of 10000 different doctors for every distinct bone in ur body that all just kinda go "dang that sucks idk" when you present with more than one fucking symptom

[rederiswrites]

I think if you're chronically ill you should be exempted from being regular sick. Quota filled, man.

[deadbeatmaker]

“do you really wanna be on that medication for the rest of your life :(?” yes actually I would love that. I know what I’m like off it

[nimandmossy]

See also: “no actually but I don’t have a fucking choice??” You are literally asking me if I want to take meds or be alive right now