#mental illness on the other hand

[dabi-dabeast]

...

Autism?

Adhd?

Good sir. Are you mentally ill?

Hah?? Mind your business. I ain’t sharing allat.

Matter of fact, is this the same punk who asked about my medical conditions? You’re not logging that into any records, are ya?

Knew I shouldn’t’ve made this damn account.

[ninja-knox-ur-sox-off]

Okay 3 things

1. I was thinking about an aroace Sonic who says things that can be taken as wildly flirty/romantic but he just means them genuinely. “You have beautiful eyes, I keep getting distracted while looking at them,” not cause he’s interested romantically in them but because eyes can be really cool and pretty man I dunno what to tell you he likes looking at cool things and he thinks his friends are neat. “You’re the most beautiful person here,” because he really thinks that, he loves his friends

2. Sonic randomly dropping heartfelt genuine comments on his friends out of the blue completely blindsiding them and then moves on like nothing happened while they’re left going ?????? Bonus points if he does something immensely stupid or jerkish just before or immediately afterwards and they can’t tell if he was serious or not with the compliment (yes he was)

3. Sonic usually being so allergic to truly vulnerable moments that when he expresses something heartfelt randomly Tails thinks he’s been stabbed or something and does not believe him when he reassures him that he’s fine he’s fine he’s not dying yeesh

[chirrups]

I feel like I have nothing to ask, I simply would love to hear more about them fucked up mermaid and murderer

And I would absolutely love to tell you about them, Tin.

This AU takes place somewhere vaguely in the Pacific Northwest (circa. 1970s-80s) in an isolated fishing town along a storm-wracked coast.

Fisheries in and around the bay have collapsed due to extreme winter weather patterns + overfishing + an oil spill from a tanker run aground down the coast, leaving most of the bay's inhabitants to live pretty much hand-to-mouth off contaminated fish in recent years.

get ready for LORE (and more drawings but mostly the LORE)

general warning: this is pretty long

The "story" as it were, kicks off when Gem finally gets fed up with another fisherman in the area, Grian, over continued conflict about ownership of fishing grounds in the mouth of the bay.

She orchestrates his death (with the eager assistance of Scott and Impulse) out at sea and passes off his death as a tragic accident in the winter swells with her being the unfortunate finder of his remains.

And it works.

See the thing is: Gem has a history of causing disappearances. It started with some accidents with out-of-town poachers. She would chase these people off and one or two would just slip overboard and happen to drown. It wasn’t her fault and besides they deserve it. But things start to escalate from there. Poachers become outsiders become fellow townspeople. Grian is someone Gem’s known for years, whose friends are tangentially her friends or acquaintances. His death is a cold-blooded murder driven by hatred and frustration. This time something is different about what she's done and Gem knows it.

But Gem is a reputable and well-known person. Her prices are fair, she drives poachers out of the bay and maintains order around the pragmatic fishing ground policy that undoubtedly helps everyone to survive.

She is the type of person to look to for guidance when things get hard because she can make those hard choices. So how on earth could it be her fault?

No one is wiser until Grian's funeral brings an old friend into town who is more than a little suspicious about the circumstances of his death.

Scar was one of Grian's crewmates when they did trawling much further south. They split when Scar took up (illegal) whaling and Grian moved into the bay.

As an outsider, Scar isn't so swayed by the goodwill the town has around Gem's name. He's no detective but for the sake of an old friend, he might as well try.

In this AU, mermaids are social mammals part of the Hominidae family that went back into the ocean similar to Cetaceans. They live in matrilineal family groups or in any other female-led organization of pods and have a very "survival-oriented" global culture (with regional variation).

Pearl is a lone mermaid whose pod lived in the bay until they were starved out by the collapsing fisheries. PNW mermaids are more territorial than other ecotypes and value strength over anything else. Pearl's inability (read: unwillingness) to oust other pods for better fishing grounds and the loss of one of her pod members summarily lead the other two to abandon her.

Without a pod to help her, hunting enough in her dwindling territory has been difficult and lonely, leading her to slowly starve just as the humans in the bay have begun to.

She took to trailing fishing boats to steal from their catch, which is how she met Gem who was mid-throwing some unfortunate soul overboard.

They have an interesting relationship.

Gem is enamored with Pearl at the halfway point between a person and a large apex predator. She loves the way Pearl needs her to live and the way Pearl, as a social creature with no pod, craves her attention. It's thrilling to have a predator at her beck and call like this and, in turn, to be so desperately needed. She also loves the way Pearl doesn't look at her like she's dangerous (the way Scott and Impulse have begun to when they think she doesn't see them). Her interest in Pearl seems to be leaching into something more than just wildlife admiration. She's begun to learn the mermaid language just to talk to her. For what? Who really knows. Meanwhile, Pearl is hungry enough to eat just about anything Gem throws her (including human bodies) and desperate enough that she lets Gem get much closer than many humans in this area have ever been to a mermaid. (They even touch, scandalous for mermaids.)

It's skewed for sure. From Gem's perspective, they've got something special going on. From Pearl's... not so much.

This being Secret-Life based, you can imagine how this story ends...

Bonus piece: Pearl and her old pod.

IN GENERAL, Biological females are generally larger with a set of rotated tusks protruding from their lower jaw for dominance displays. Biological males are commonly smaller and more agile, with more dexterous hands due to decreased adipose tissue distribution over their bodies. (They actually have 3 biological sexes and tons of social gender variation but that's a talk for another time). Pre-cultural awakening, these pods would form around a biological female and their harem for reproductive purposes. That female would then protect the harem from other females looking to "steal them" or their territories (like horses but reverse-style). In modern times, these pods are often composed of groups of friends/related family members as sort of "platonic life partners" and stealing other pod members is seen as a very archaic sort of thing. Territory stealing, however, is still up for grabs.

[czekoja14]

twisted wonderland posting for . the first time i think ? or the second one if you count my own birthday drawing .. having that twst because i finally got myself to finish book 6 !!! my obsession with malleus is returnign because of starting book 7 too zzzzzzzzzzz

[orvllnki]

this like fucking weird robot family is doing numbers on my psyche rn . big fan of them i think .

sage and metal should be like 🤞 to me but i guess we will see in the future . i havent been active in the community enough to really pull enough info to have a full mental image . however a motherfucker can always sit on the floor and contemplate tge meaning of a family.

im going insane i think

[cosmicdenro]

wweeewoooweeewooo

[fount-of-knowledge]

born to be silly forced to combat the deep urges to delete my entire online presence and start over from scratch 😔

[australianklaviergavin]

OTHER DESIGNS: Baby bunny Trucy, Uendo lizard, Prosecutors, Aura Blackquill, Clay Terran, Bobby Fulbright, Skye Sisters, Valant Gramarye, Iris Wilson, Datz Are'bel, Mael Stronghart, Enoch Drebber, Satoru Hosonaga, Wocky Kitaki

AUXILIARY POSTS: modpoppy's Uendo, okartichoke's Caracalvier, Iris 1.0

Compiled here is almost every single design sketch I've done for this... AU? It's my nonsense, take it or leave it! The tag for it is "#The Great Detective's Animal Attorney", but the prefix is mostly for filtering, I just call it "Animal Attorney".

I must disclaim that this is not meant to "compete" with any other AUs or designs! They're all real and I hope my dognix can be friends with yours.

The below post has my designs for the Gavin brothers, Maya, Franziska, Phoenix, Athena, Sholmes, Lord van Zieks, aaand a teeny Harebrayne. Sadly, no Apollo this time, all his art is doodles and I hit image limit anyways! Him and Trucy may get their own post soon, however!

These were all done with my non-dominant hand, and Athena was done on a Magma board, if that explains the anything.

The Gavins are the first ones I really did, and they're both caracals! I've kinda wanted to go back and change Klavier a bit in regards to an insane headcanon, but caracalvier is too iconic like this, I just can't do it

Putting Maya and Fran together, cause they're both kitties! If Maya was a specific breed, then I forgot, but Fransizka (and her dad, by extension) are both oriental longhairs. If I weren't presently injured, I'd draw a scrungly Manfred, but alas your mind's eye will have to do the work.

Phoenix is a puppy dog! Very very nearly made him a hyena... But I couldn't. I couldn't reconcile it with Ryunosuke. I have a Yeenix in the back, for any interested parties

LASTLY for my main-series designs is Athena! She's a seal. I don't think I had a specific reason besides not being able to get ears to fit with that ponytail... Might change her to a sea lion, though!

AAAAND TGAA BONUSES... Aka the Barokorn Cinematic Universe

Sholmes is a lion (with his sad little low testosterone mane)! He was easily the hardest, as I went back and forth... Alot. He was a pigeon at first! I contemplated rabbit..? But I tried to steer away from the mascot designs, generally. I'm happy with the decision of lion, however, mostly cause it gives him fun symbolism with the whole Professor thing.

The van Zieks-es are unicorns, and Bunnybrain is a pony! I could go more in-depth, buuut that's kinda spoilery

Ryunosuke and Kazuma (not pictured) are both puppy dogs, and I think I settled on bunny for Susato?? To make her pops a bunny also? I also have some sketches of her as a sugar glider, but I don't really like most of their art 👎 so there's a couple gaps here

If anyone wants to (??!?!?!!) you can use these designs for pretty much anything you want (and feel free to extrapolate upon the rest of their designs, most of these are very limited), just make sure to tag me, partially for credit, but also because I'd just REAAAALLY want to see... They are my babies, my world, I think I might break down into tears (/pos) BUT ANYWAYS I LOVE YOU ALL. THANK YOU FOR STICKING WITH ME AND I HOPE THIS MAYBE MOTIVATES YOU TO DRAW SOME SILLY ANIMAL ATTORNEYS OF YOUR OWN!!

[sunstonespark]

happy 25th birthday to my favourite show ever (ft. the anniversary of my otp meeting) and of course, to my darling gf (@ichijokaoru)!! ❤ 👍

(bonus below)

[cestacruz]

Anyway since i dont think i actually posted these, have this

Bitches from a Monster AU theyre all gay

Uhh more in the tags cuz i dont wanna type here

[starflungwaddledee]

I did not mean any offense with my last ask I just wanted to know how good of a friend you are to Starflung Bandana. Is she a Kirby level friend?

hmm, i'll step in. starflung here (not starstruck, who we'll leave outta this one) but bandee can't answer this because he'd never consider categorising his friends this way. his relationships with each of his friends and loved ones are unique and individual and resonate with him in a way that is incomparable to each other; every one is irreplaceable and inimitable!

that said.... absolutely not. kirby is utterly singular to everybody who knows him. nobody is a kirby-level friend; not to bandee, not to anyone.

[caligvlasaqvarivm]

wanna ask how you feel about the eridan bpd headcanon/theory(?? not sure what to call it!) you're so good at your character analysis and i'd love to see your outlook on it

Since I don't have a degree or any formal training in psychology, I feel deeply uncomfortable diagnosing characters. I've made an autism joke before but only because I'm on the spectrum. He's definitely traumatized and anxious, but I mean those as descriptors of his behavior rather than capital-D Diagnoses. I try to focus on those when I can - the cause and effect of cognition, self-image, and behavior - and those factors may very well match up with DSM criteria, but I try not to touch an actual diagnosis with a ten foot pole unless the author has explicitly stated that X character has Y condition.

[theokusgallery]

I hate that I have reoccurring themes in everything I make. YES this guy has a complex over the fact that everyone prefers his sibling AGAIN. YES he was ostracized by his peers since he was in primary school and never knew why until years later. URGH

[essayist-unexpectedly]

Love, Codependency, and the Accidental Toxicity of Mafuyu and Yuki

While Given is centred around Mafuyu and Uenoyama’s relationship, the lasting impacts of Mafuyu’s romance with Yuki are undeniable. The relationship between Yuki and Mafuyu was one from childhood that grew and evolved with them, eventually landing them in a romantic relationship. While some think that the two were made for each, one character being Hiiragi, a childhood friend who watched the duo evolve, however there can be another viewpoint to this. The other implication when reading Given can be the idea of codependency between Yuki and Mafuyu.

Codependency is defined as “excessive emotional or psychological reliance on a partner, typically one who requires support on account of an illness or addiction” by the Oxford Dictionary, as “a psychological condition or a relationship in which a person manifesting low self-esteem and a strong desire for approval has an unhealthy attachment to another person and places the needs of that person before his or her own” by the Merriam-Webster Dictionary, and finally as “a relationship is when each person involved is mentally, emotionally, physically, and/or spiritually reliant on the other” by the VeryWell Mind website. While all varying, these definitions all seem to agree that codependency is an unhealthy/excessive psychological reliance on another person, often with negative reasons and consequences. Going forward with this definition created from the previous definitions, it could be seen that Mafuyu and Yuki were codependent on each other, rather than just a one sided codependency, like some people experience.

One of the first hints to Yuki and Mafuyu being codependent comes from their constant being together. From the moment that they meet up until they go to different high schools, Mafuyu and Yuki are known to always be together. Even if the two weren’t directly interacting, they are consistently within each other's radius, easily within sight of each other. When appropriate, the duo would also be touching, leaning on each other, or holding each other, really whatever touch could happen in the moment. While the constant togetherness and touch may not seem too serious, it is important to remember that codependency is reliance on another person. Their consistency and wanting to be together constantly is possibly a subtle but real sign of codependency.

The next sign is their general relationship with each other. The two were childhood friends to lovers, a trope that can be built on drama and love triangles, but in this case seemed to be a natural progression between the two characters. Yuki found Mafuyu when they were young children, likely around the age of 5, give or take a year. As the two grew up, they also grew together, becoming intertwined together, becoming inseparable. The duo were almost always together, and with that they also grew to have ‘complimentary’ personalities, as Mafuyu was a quiet and small presence while Yuki was a loud and massive personality. The duo seemed to mold themselves to fit into each other, creating a reliance for the other to be what they were not. One such way this would create a reliance is them needing each other to bounce off of. This is meant as in Mafuyu needing Yuki to speak for him and bring a sense of loudness, of life and excitement for him, while Yuki needed Mafuyu to provide a quiet and reliable space for him, someone to listen and be consistent. Not only do the two seem to have become what the other needed, but another part is their communication. The partners seem to have developed communication that didn’t always require speaking, at least when they were younger. The two seemed to be able to understand each other, understand what the other needed, and it made them even more suited for each other. Every factor of how the two were weaved together throughout their life contributed to the codependence that the two appear to share. It was the evolution from children to young teens together in such similar and at times lonely situations that caused them to grow so close, and likely so reliant on each other for a certain stability and love that they both needed, showcasing the psychological effects of codependency.

Another point towards their relationship being unhealthily dependent is Hiiragi’s view of their relationship. In some ways, Hiiragi seems to view the two as a perfect love story, perfect harmony, due to how they seem to compliment and grow with each other. In some ways, Hiiragi appears to consider Yuki and Mafuyu as perfect for each other. It was Hiiragi who, in the manga, called Yuki a “dominating and moody” person, while claiming Mafuyu to be “submissive and reserved” in terms of personality. It was observed by Hiiragi that Yuki seemed wholly and purely in love with Mafuyu. Through the chapters where Hiiragi narrates his own view on the two, there is a rose-tinted glasses look at the duo. Every character holds a bias when it comes to memories of Yuki as well as his relationship with Mafuyu, with mayhaps Shizusumi being the least biased of the old group. It is because of this bias though that Hiiragi’s view feels like he considers the two to be true love and harmony in romance, he idolised Yuki, and always cared for Mafuyu, making it difficult to point out any flaws in their relationship because of this care. It also seems that Hiiragi, likely accidentally, can be used to point out how close they were, and how reliant they were. Hiiragi stated that “Yuki needed Mafuyu, and Mafuyu needed Yuki” within episode 8 of the anime. The use of the word needed specifically is what matters so much. To claim that they needed each other, Hiiragi was admitting that it wasn’t as simple as them wanting to be together, it wasn’t as much of a choice or a want, but rather the word need has a more definitive feeling, they had to be together, never straying far or else they would suffer - which ended up being true. The truth of Hiiragi saying they needed each other was realised when Mafuyu went to a different high school and Yuki got a job, distancing them. And everything comes together during their fight, which Hiiragi and Shizusumi were witnesses to. This fight is another time where one can spot Hiiragi’s rose-tinted view of Mafuyu and Yuki’s relationship, as Hiiragi claims that the fight was a small, dumb fight, one that every couple experiences. The reason this is seen as optimistic at best is because it is clear to readers and watchers that the fight was big, it was yelling and it was mean - cemented by Mafuyu’s final sentence in the argument. Everything that Hiiragi says about Yuki and Mafuyu’s relationship feels like he was observing with rose-tinted glasses, keeping optimistic about it even as it became worse towards the end. The clear bias may mean this section shouldn’t exist, but it can also be seen as someone witnessing a codependent relationship and thinking all is perfect, when they are watching an active trainwreck. Hiiragi thinking about how the two were an opposites attract relationship, saying they needed each other, and downplaying their fight, all feels like him trying to make sense of what appeared to be his definition of a perfect relationship, and it was as if he himself could not see the codependency that someone reading or watching the series could see through him.

The fourth reason one can see them as codependent is Mafuyu's social life outside of Yuki. While yes, he also had Hiiragi and Shizusumi, it appears like he didn’t have anyone else, and even the other two were not as close to him as Yuki was. That statement isn’t meant to diminish Hiiragi, Shizusumi, and Mafuyu’s friendship, rather it is meant to lift the relationship between Yuki and Mafuyu as being on an entirely different level. It’s easily seen that Mafuyu does mainly socialise with Yuki and the other two, but more Yuki than anyone else. It feels like the two were together first, before anyone else could join, creating their little bubble of just Mafuyu and Yuki. Where this truly becomes a concern however is when one looks at Mafuyu’s social life outside of Yuki. As previously stated, at times it seems like Mafuyu felt a certain disconnect at times to Hiiragi and Shizusumi, and this suspicion is furthered by his complete shut down after Yuki’s death. While not everyone will be able to reach out and talk to others while going through grief, perhaps part of their cut off was not only Mafuyu’s depression but also him worrying that he was not close enough to the other two to be able to reach out. Ignoring that speculation, one can take into account the character page of Mafuyu, which states that he was never a part of any clubs or teams, meaning he never really branched out socially. While not much is explored about Mafuyu’s life before Uenoyama outside of what is with Yuki, this feels intentional to show that there wasn’t a lot for him outside of the other boy. The flashbacks seen in Mafuyu’s point of view are consistently with Yuki - their first meeting, their school days, dates, their fight, and finally, Yuki’s death. Nothing else seemed to truly exist, it was as if Mafuyu could ignore all others for Yuki, as he was his world. The lack of a social life can definitely be seen as a sense of reliance on Yuki, solidifying the idea of him being codependent on the other.

The second to last point within Strawberry Swing, specifically the fourth part being a supposed dream sequence that honestly feels like an actual connection to Yuki in the afterlife that Mafuyu has. This dream is where the two actually seem to say goodbye to each other, a certain feeling of peace and melancholy flowing from this section of the manga. Within part four of Strawberry Swing, Yuki and Mafuyu talk on a swing set, with Yuki telling Mafuyu that the redhead has to go, and Mafuyu then leaving. After this, Yuki states that there is a gaping hole within Mafuyu left behind from Yuki’s suicide, and while it may get smaller with time, it shall never be fully repaired, and Yuki would always reside in that hole, listening to Mafuyu as he sings. Overall, this section of the story is a beautiful look into Yuki’s mind on Mafuyu’s healing, and totally feels more like a spiritual encounter than just a dream thanks to the point of view appearing to be Yuki’s, and the outside look at Mafuyu and his grief. Its beauty is only enhanced by the tragedy that speaks within this section though, as it seems to admit that Mafuyu will never fully be able to move on from Yuki or heal from his death. That being said, grief is of course an extremely long process, and it isn’t a linear path to moving on or somehow getting rid of grief, that is simply not how it works. It is not the grief itself that is interesting in this section, but rather the way that Yuki swears to always be in Mafuyu’s heart. Even in death, Yuki will forever stay with Mafuyu, even if he isn’t alive or physically there. Not necessarily a sign of the two being codependent, but definitely an interesting aspect of the manga to consider when it comes to their relationship.

The final point is a line brought up in the Strawberry Swing story within Given. This line is said by Yuki’s mother, Saeko, who states that “Mafuyu… I selfishly believed… that you were that child’s anchor”. She believed that Mafuyu was Yuki’s anchor to the world, that he was the one who kept the other boy alive and stable, tethered to the world. There is also a line where she mentions how Yuki was “like his father”, who is either outright dead or at least implied to be dead, and this line also basically tells the audience it was suicide, and a mental disorder was likely passed down to Yuki from his father. It is made clear in Strawberry Swing that Saeko believed that Mafuyu would be able to keep Yuki alive and well, which isn’t something two children/teenagers should have to do for each other, which she even admits to, saying she was selfish in believing Mafuyu was his anchor and that it was wrong of her to think. This part screams of a mother who watched her son become extremely psychologically reliant on another boy, and only after his death is able to reflect and see how unhealthy it was for both of them. After all, the role of the anchor is extremely dangerous for both parties, as it puts so much pressure on the anchor to keep a good and stable presence, while it leaves the other person with one person who truly connects them to the world, rather than them feeling as though they have a full support system. These roles become even worse in the case of Mafuyu and Yuki, who are two teenage boys in love with mental health issues. They were not stable enough to be in the roles of anchor and tethered person, even if they wanted to be that for each other. So, while terrible for them, the anchor comment definitely implies that Yuki was extremely reliant on Mafuyu to keep him tethered to the world, keep him living, which is a sign of codependency.

In the end, there are codependent tendencies that seem to exist in Mafuyu and Yuki’s relationship. The two boys appeared to rely on each other mentally and socially, which can qualify people for a codependent relationship. While peers, especially Hiiragi, appeared to see them as two perfect halves of a whole, idolising the weaved together nature of Mafuyu and Yuki, it can easily be seen as a rose-tinted view to the duo’s relationship and end up revealing more negative than expected. The additional view of an adult, specifically Yuki’ mother, Saeko, seeing Mafuyu as an anchor for Yuki only enhances the idea of an imperfect and overly reliant relationship. Although it is painful to admit, there is little doubt that one can pick up on hints and read Yuki and Mafuyu as an accidentally toxic codependent relationship.

[deservedgrace]

I don't think that framing "Marginalized™️ Atheism/Deconstruction" and "Cishet White Male Atheism/Deconstruction" as inherently ~separate and distinct~ is super effective (and disclaimer I'm specifically speaking about my experience with christianity, atheism, and ex christian atheists/deconstructors), but also... okay so I was raised in a cult, and cults are oppressive for all its members. Nobody gets out unscathed, everyone experiences the abuse tactics, everybody is a victim. But within the cult there is a hierarchy, and cishet white men are at the top. So while the cult is oppressive to everyone, and everyone is harmed in some way, it is also uniquely oppressive to queer folks, to BIPOC, to disabled folks, to women, etc etc. And the thing that happens to some of those cishet white men is they leave an oppressive cult, where they are considered the "default", and they go into the ~real world~, where they are also considered the "default", and even in atheist/deconstruction spaces, their bodies and experiences are often the leading voices.

The men that leave go from an oppressive patriarchal culture to a far less oppressive (to them) patriarchal society. The white people that leave go from an oppressive racist culture to a far less oppressive (to them) racist society. The people that leave go from an oppressive culture that does not value marginalized voices to a different, less oppressive culture that also does not value marginalized voices. And if you personally do not experience [xyz] oppression, it can be difficult to even realize there are things surrounding that you have to deconstruct unless you listen to the voices of the oppressed. But some cishet white men go from being considered the "default" in an oppressive culture, to being considered the "default" in a less oppressive culture (to them). Their experience of "overcoming systemic oppression" comes from leaving the church, and it can be really easy to fall into the trap that the church, specifically, is the sole oppressor and enemy of everyone.

Of course this doesn't happen in every single case and it's also not exclusive to cishet white men. But those blind spots are why I think it's important for everyone to listen to a variety of voices when they're deconstructing, especially if those voices are talking about oppression you wouldn't have experienced firsthand.

No, our deconstructions are not inherently different, but the experiences and circumstances prior to it often are. It's okay to acknowledge that and beneficial for everybody to listen to each other's experiences.

[wellplacedbanana]

I’ve seen a few posts recently talking about how important it is for us to share our tips for dealing chronic illness with each other, and I’ve realized that as a freakishly avid community enthusiast, I’ve been falling down on the job. So, I present

Wellplacedbanana’s Ridiculously Long List of Tips for All Things Chronic Illness (Curated Over 8+ Years):

Infusion Centers

Headed to an infusion center to get that sweet sweet (expensive as hell) live-saving medication pumped directly into your veins? Here’s what I do.

Bring headphones or earplugs. Most infusion centers try to maintain a semblance of quiet for the patients, but it can get loud fast—beeping IVs, pulse ox monitors, loud families, codes. Some infusion centers do pods of multiple people and some do individual bays, so this can affect noise levels.

Drink lots of water before if you have to get an IV placed. Don’t worry too much about bringing a water bottle because they’ll give you one when you get there. (Of course, if you have something like POTS and need more intense hydration, bring the damn water bottle.) If you’re not hydrated and they can’t find a vein, they’ll call in the ultrasound tech, and they’ll bring the longest IV needle you’ve ever seen. It hurts. Drink water.

Bring a book or your Switch or something else to entertain you, but don’t expect to actually do it. I tried bringing papers to edit the first time because I was like “Oh it’s an hour and a half of uninterrupted free time. I can get so much done!” I was wrong. The nurses are constantly checking in for vitals, the unit can be loud, and I spent the whole time trying not to vomit everywhere. Different infusions will have different side affects. Knowing what yours might be will help you plan for what you want to bring. Knowing how long your infusion will be can also help. Most infusion centers have to keep you 20-45 minutes after your first dose of a new medication to make sure you don’t have an allergic reaction, so factor that into your time too.

If you’re in a pod with other patients who’re friendly and if you feel up to it, don’t be afraid to talk with them. Lots of them are lonely, bored, interested in other people, etc. I met an elderly Thai lady one time who had been there for three hours and would be there for another four AFTER I left. We talked about her husband and her kids, and she listened to me talk about punctuation as style in prose. It made me feel less alone in the medical system and helped distract me from the nausea.

Conversely, if you don’t want to interact with anyone, snap on those headphones and block everything out. The nurses will get your attention if they need you. Don’t worry about staying lucid. Your job is to get the infusion and do what’s best for you.

You can bring snacks if you want, but most units/centers will have something to munch on or can order you something from the cafeteria if you’re at a hospital. Also the medication and the smells in the unit always make me nauseous, so it’s kind of a waste for me to bother pulling together food before I leave. You can always eat before or plan to get something on the way back. Going through a drive thru to get something with protein is my go to.

If possible, schedule your next appointment while you’re there. I have to go every three months, so I schedule the next one while I’m there, and then I never have to make any fucking phone calls. Phone calls are the worst.

My last and most important tip: ask the nurses when you need something. Blankets, water, snacks, pain meds, the lights turned off. If they can’t do it, they’ll tell you. They’d rather have you ask and have to say no, then you be uncomfortable. Don’t suffer if there might be a solution.

Dealing with Shitty Doctors

There are shitty doctors everywhere, in every specialty and every hospital system. It sucks, and you can do your best to avoid them, but most chronically ill patients will have to put up with one at some point. Here are my suggestions:

If they’re refusing to acknowledge one of your symptoms is a problem (won’t order tests, won’t refer you out, won’t ask any questions), tell them it’s affect your Activities of Daily Living. ADLs are one of the ways doctors measure severity of symptoms and quality of life. ADLs are the absolutely essential things you need to do to be a functioning human: eat, shower, get dressed, brush your teeth. ADLs are a trigger word for most doctors. Physical therapists and occupational therapists were created specifically to help patients achieve their ADLs. If you’re having severe joint paint, say it’s affecting you’re ability to shower and dress in the morning. If you have intense fatigue, say you’re too tired all the time to cook food to eat or even brush your teeth before bed. Tell them your symptoms are affecting your quality of life and your ability to function daily. This won’t always work, but it’s a good starting place. (A side note: if you have have to submit an insurance appeal for something that was denied, citing ADLs as a reason to receive the treatment/medical equipment/doctors visit, will often spur them into action. Sometimes, it’ll just make them ask more questions, but questions are better than flat out denial. This was a very helpful tactic when I was trying to get my manual wheelchair approved. I told them I was unable to complete my ADLs and it was affecting my quality of life, and they eventually came around. It’s also important to remember that ADLs are only the most base tasks that you need to live. Driving, working, socializing—those aren’t included in ADLs, and insurance especially will laugh in your face if you try to say you need medical equipment for something like that.)

Lots of doctors, consciously or unconsciously, will judge how you’re actually feeling by your mood in an appointment. I had a pediatric neurologist who couldn’t be convinced that my pain was at an 8 because I would laugh with my mom in the waiting room. Eight months in, I started getting real quiet, not talking, crying when he talked, all that shit, and he was so fucking flummoxed. He was like “what changed?? Are you depressed??” And I had to remind him that I was thirteen with a severe shoulder inure that hurt every time I breathed. Doctors will judge you based on how you look and how you present. It’s horrible, but it’s true. Present to them in the way that represents what they’d expect to see for your symptoms.

Whatever you do, don’t say anything (or send any snappy messages) that might be considered aggressive until you are absolutely, 100% positive you will never ever have to see them again. I’ve had a few doctors that said ridiculously horrible things to me. It’s tempting to send them a message about how shitty they’ve been or how much they’ve hurt you, but it won’t help. Shitty doctors have fragile egos and they don’t like to be challenged. They won’t take this well, and they’ll mark you as attention seeking, emotional, mentally unstable—you name it. When your other doctors call to ask questions about symptoms, etc, they’ll start talking shit, and everything gets complicated. This might sound dramatic to anyone who hasn’t seen it happen, but honestly, the medical system abuses emotion and mental illness to discard patients that aren’t afraid to advocate for themselves, and this is one of the least immoral ways they do it.

Remember that you don’t owe your doctors anything (except basic human decency). If they ask you to do something and you can’t or don’t want to, don’t. My psychiatrist was really fixated on me getting a light box to cure my depression. I did Not want to do that, so I didn’t. Sometimes, your doctors won’t move on to further treatment or tests until you try it, but most of the time you can say, “that’s not something I’m able to do right now. Let’s explore further options,” and they’ll move on.

Remember that learning to advocate for yourself takes years of practice. Just do your best, and try not to blame yourself for the ways you get mistreated. Therapy is the best investment I’ve ever made for this. It’s helped me learn how to advocate and how to process medical trauma.

Medication

For gods sake, take the as needed medication when you have a migraine or if you’re nauseous. Don’t punish yourself.

This might seem like a no brainer, but if you’re traveling and you’re going to take your medication bottles with you, put them in a ziplock bag. They will definitely open in your suitcase, and you’ll have to pick Levothyroxine out of your socks.

If a medication gives you icky side effects, tell your doctor and ask if there’s something that doesn’t do that. For me personally, it’s hard to find medication that works at all, so I often get stuck with things that make me feel like shit. But it doesn’t hurt to ask. Sometimes new medications come out or they dig up old ones.

Some medications come in dissolvable tablets or suppositories. They’re not fun, but if you have trouble swallowing pills, this is a good way to go. Again, communicate with your doctor about these things. I know that there are Scopolamine patches for nausea too. I’ve never used them before, but it might be worth looking into if need easy nausea relief.

All Things Wheelchair

Man, wheelchairs suck, but they’re also amazing. If you find yourself using one, you’ll encounter a steep learning curve.

If you’re not super buff when you first start, it’ll seem impossible to go up even a slight incline. Your arms will get stronger the more you move around, but it might take time. I eventually bit the bullet and started doing personal training. I’m lucky that I can afford it, and I know it’s not an option for everyone, but if you can, find a trainer who won’t saying anything shitty and who’s willing to accommodate. I worked with a queer-owned gym to find someone I was comfortable with. We do upper body strength training, and it gives me a chance to move my body more often. I still can’t go up big hills, but I feel infinitely more mobile. Give yourself time to adjust to the new strain on your body, even if you don’t do training for it. You’ll be sore in the beginning. Ice and heat will be your friends after long days. If your wrists start hurting a lot, you’re not wheeling correctly, and you should ask your doctor for a referral to PT or OT. Oh and your hands will be fucked for the first few weeks. I bought special wheelchair gloves to try to combat this, but it just made it harder for me to maneuver. Now I only use the gloves if it’s cold, if I’m going down hills, or in the rain/snow. (But seriously, if you’re going down steep hills, use traction gloves.)

Learn to pop a wheelie as soon as possible. It’s such a helpful skill. If you get good enough, you’ll be able to get up over single steps and traverse shitty pavement.

If your wheelchair has a cushion, then it has a cushion cover. Wash it.

Time for the grossest part: cutting hair out of your caster wheels. I hate this. I hate it so much. It’s fucking disgusting, but you have to do it. It’ll fuck up your wheels and make it harder to maneuver. Also it’s just gross to have all that nasty hair hanging out by your feet. Get yourself a long pair of thin scissors and cut all that hair out every week or every two weeks. If you don’t have long hair or live with people who have long hair, then you might be able to wait longer. You should also sanitize your hand rims while you’re at it. Hand sanitizer or Clorox wipes are great for this.

You’ll notice that it’s fucking impossible to carry shopping baskets or suitcases if you use a manual chair. Some people try to balance them on their laps or wedge them onto their footplates, but it’s pretty precarious. I got these weird peg things that attach to the frame. You can place a basket or your bag on it and still keep your hands free. Here’s the link for the ones I got, but it depends on your make and model, so do some research and call some different companies before buying anything. Also, make sure to measure the distance between the two sides of your frame to make sure a basket will be able to balance on the two pegs. Your frame might be too wide for this. Mine is, but I bought a special basket to take to the store that’s wide enough to reach across.

Lots of people will offer to push you. Some won’t even offer; they’ll just grab on and take you in whatever direction. It’s insanely invasive and dehumanizing. Don’t be afraid to put on your breaks if someone does this. I can stand and take small steps, so sometime I just get up and stare at them. You can also buy covers for your handles that have spikes so people can’t grab them. I know some wheelchair users who like it when people offer to push them. That’s good too! Take the help if you want it. Just remember to prioritize your safety and comfort. I had a big debate with another disabled person about whether it was infantilizing for someone to offer to hold open the door for us. I’m firmly on the side that they can offer, and I can say no, and they can listen, and then we can both appreciate the moment of shared humanity between us. They did not agree. Disabled people fight and disagree all the time because we’re not all carbon copies of each other. That’s okay! Just be respectful.

Getting a customized manual wheelchair was one of the single most stressful things I had to deal with. Insurance doesn’t like to pay for them because it’s about 3-12k, depending on the specifications and add-ons. But it’s also been the most liberating thing I’ve done since getting my mobility stripped from me. I’m not sure how it works for everyone, but I got a referral from my doctor to a custom wheelchair company. From there, they took measurements, discussed needs, and showed me different models. It’s going to be really really difficult to know what you want the first time. There’s a lot of different brands and customizations, so do your research and talk in depth with whoever’s making your chair. Ultra lite rigid frames are my favorite because they’re usually only 15-40 pounds, and the wheels can come off to make it even lighter. However, rigid frames don’t fold together in the middle like classic manual wheelchairs that you might find at a hospital or get at a rental company. They can be difficult to fit in the backseat of a car or in some trunks, so make sure to measure any cars you ride in regularly. Some people prefer to have tilted wheels so they can turn easier. Some people don’t want anything to do with that. Depending on your mobility and the people in your life, you might choose not to add push handles to your chair. I added some to mine because I often get dizzy, and it’s helpful to have handles in case I need someone to push me out of the crosswalk or into the shade. People who are highly independent and extremely strong might not want push handles because they won’t need help up steep hills. I like my handles a lot; however, my chair back is shorter than a standard wheelchair because it helps increase range of motion when I’m wheeling, so my push handles are lower than normal, and anyone who wants to push me has to hunch a bit to reach. Again, do your research and talk to your rep before making final decisions. Some companies will let you test out the chairs they have on hand to see what you like. It’s important to work with a wheelchair company you really like because you’re literally putting you life in their hands. I’ve had better luck with smaller, locally-owned companies, but you can’t always get referrals there, and not every town has them. Here’s my tip to you: Numotion sucks ass. Avoid them. My branch of Numotion seems to be an outlier; I’ve had really good experiences with them. But most of the time, its impossible to get ahold of anyone, their hours are few and random, and their customer service reps are rude. But! After you’ve completed your order form—gotten measurements and found customizations—they’ll submit it to insurance. This is the tricky part. I went through four appeals, before I got mine approved. Luckily, I had insurance through my mom’s job, and after the last appeal, her company told the insurance that they had to pay for it. This won’t be the case with everyone. Be diligent with your appeals. Have your doctors write specific, clear letters about why you need it, including information about all the customizations and add-ons. It’s likely that they’ll only pay for the base chair, and you’ll have to pay out of pocket for any extra things. Another note: most insurance companies will only pay for a new chair once every five years (if they approve the first one at all), so be sure that the chair you pick out will work for you for at least the next five and a half years.

I had an advisor in college tell me something devastating once: there is no AAA for wheelchairs. I’d broken a caster wheel and gotten stuck on a university sidewalk in 102 degree heat, and she was telling me about her own experiences getting stranded after one of her tires popped. She’s right; if you’re wheelchair breaks, you’re stuck wherever you are without any backup. Carry your phone with you. Tell your friends or family where you’re going before you leave. Familiarize yourself with the wheelchair repairs shops in your area. Sometimes places like bike shops will be able to help you fix smaller things. I always carry an Allen wrench with me in case I need to take a part off. And don’t worry; you’ll find that if something does go wrong, people are far more willing to help than you’d expect. One of the sculpture professors in the art department found me that day and went back to his workshop to get all his tools. He brought me water and sat in the sun while he tried to fix my wheel, and when he couldn’t, he offered to drive me wherever I needed to go. This man was a tenured professor with a prestigious MFA, and he was running late for a party where he was supposed to be handing out awards. You’ll find lots of good people when things inevitably go to shit.

Going along with the last point, your wheelchair will break, and you will have to send it into the shop to get repairs. If you can, invest in a cheap manual chair that you can use in emergencies. If you live with other people, you can buy a transport chair for cheaper, but you’ll need someone around to push you because it won’t have hand rims.

If you’re new to wheelchair use, give yourself space to feel all the emotions. When I first started, I had been using an office chair(!) to get around. My mom would push me from my bed to the bathroom and then back to bed while we waited to get a rental. I was so relieved when I got my own chair that I pushed everything else down. It took months to allow myself to be sad about all the things I couldn’t do anymore and be angry about all the inaccessible infrastructure that America has. Don’t push it down. Talk to a therapist or find people in the community to discuss it with. (If I choose to talk about my frustrations with friends, I always start with “I need to vent right now, and I’m grateful you’re willing to listen to me, but I’m not looking for any solutions to this at the moment,” or “can you give me some suggestions to work around these things that are frustrating me?” This gives my friends insight into what I need, instead of making them guess. It keeps us both from getting frustrated, and I highly suggest it, especially if you or your friends have trouble navigating social situations/expectations.)

Hand Controls

Hand controls are great option for your car if you’re unable to use your feet to drive. I got mine about a year back, but it was tricky and really confusing at first.

First thing you need to know: you can’t get hand controls without a prescription from a specialist. Usually a certain type of occupational therapist. You can look up driving rehab OTs in your area, but there aren’t many of them, and lots of the time you’ll have to drive several hours to see one. There’s usually a long wait list as well. (And of course, a lot of them don’t take insurance.)

If you’re able to find someone who’s certified, they’ll do an intake appointment and assess your physical abilities and needs. Sometimes, they’ll do the assessment and decide you aren’t fit to use hand controls. This can be for a multitude of reasons, including impaired mental cognition and slow reaction time, issues with hand or arm mobility, or there might be a better way to adapt a car for you. Again, it varies greatly on the person, and I’m not an OT, so I don’t know all the ins and outs. If you pass the assessment, and they view you got to drive with hand controls, you’ll be required to do a certain amount of training where you practice using different equipment. Some OTs will know what you need to use right away, and others will have you try different things out to see what fits best. There’s a lot of types of hand controls and a lot of adaptations that can be done to a car, so it really depends on the person. My training was only about 15 hours (plus independent driving practice), but it’ll depend on whether this is your first time ever driving, if you’ve driven without hand controls before, and if you have any other medical issues that might make it hard for you to adapt. Once you’ve completed the training and received your certificate from the OT, they’ll write a prescription to send to a shop that does specialty car adaptation. Kind of like wheelchairs, the shop you go to is very important. Ask your OT if they have any favorites in the area. Insurance never covers this, and some shops will way overcharge you if you’re not careful. My hand controls were about 3k out of pocket, but it was definitely worth it. It would’ve been a lot more to add other adaptations like a lift or a ramp, but sometimes you can buy used accessible vans for cheaper than adding it to your own car. Something to know: you’re usually able to turn your hand controls on and off. So if your friend needs to borrow your car, or you need to let a mechanic test drive it, you can disable to hand controls and allow someone else to use the foot pedals as normal.

Overall, it’s a very long, very expensive process, so plan ahead and be prepared to wait and pay.

Navigating Raising a Kid with Chronic Illnesses

I don’t have any kids, but my mom was my sole caretaker growing up, and I can offer you some of her thoughts. You have to remember that no matter what age your kid is, chronic illness is an impossible thing for them to deal with, and yet they have to deal with it anyways. Sometimes, there’s no good way to comfort a child who’s in 10/10 pain, or who’s about to undergo a life-altering procedure. All you can do is your best. Communicate. Offer support. Give affection. Make your love unconditional. I was a very angry teenager. I was angry with my mom that she couldn’t fix it, and I was angry with my doctors for the way they treated me. There were days where I would yell and sob and refuse to take my meds, and there where days where I would stare at the wall and not respond to anything. It drove my mom up the wall. She’s used to fixing things, and this was one of those things she couldn’t even help. I know she stills holds a lot of guilt for this, but she shouldn’t. She did her best. You’re doing your best too. You can’t fix everything. That being said, here are her suggestions:

Therapy, therapy, therapy. They might hate it, but some day, they’ll thank you. Remember that not every therapist is right for every patient. If your kid wants to switch to a different therapist, let them. It’s better than them sitting and not speaking the whole session.

Lots of kids with developing rare undiagnosed diseases will go through this vicious cycle where they get a new symptom, get sent to a specialist, get dismissed, and then develop a new symptom and start the process all over again. It’s not easy. My mom was a fan of throwing Pity Parties. Every once in a while, when the grind of it all started making us feel hopeless, she’d take me to the store and say, “pick out snacks and drinks. We’re going to throw a pity party, gorge on sugar, watch Lord of the Rings, feel bad for ourselves, and tomorrow, we’ll dust ourselves off and try again.” It helped. It was good to know that sometimes you can let life feel unfair, and it was even better to know that the next day it would be easier to try again.

A lot of being chronically ill as a kid is getting decisions stripped from you and having unexpected negative experiences. My mom would try to do spontaneous things every once in a while to remind me that not all surprises are bad. Instead of driving straight home after school one Friday, she took me to Starbucks without saying anything. After an MRI, she stopped at an art fair and let me pick out a necklace. We would go to the library after I spent the day in the hospital. Sometimes, she’d call my aunts while I was at school to come over and play card games on the weekends. And she was really big on giving me choices in everything. She never made me agree to new (non-lifesaving) treatment. Ever. If she really wanted me to do it, we’d talk it over and come to an agreement that made us both happy. Sick kids are forced into adulthood early; they know how to make calculated, logical decisions when needed. Let them be a part of their own healthcare. (They should also be given the chance to make rash, stupid decisions that have no bearing on their health.)

Keep track of everything. Doctors, meds, ER visits, PT exercises, diets they’ve tried for GI issues, everything about the surgeries they’ve undergone. Some day, you’ll need it. Or your kid will grow up into a chronically ill adult, and they’ll need it.

Talk to their school counselor about getting a 504 or IEP. Even if they’re not struggling. I was a super academically minded kid; I didn’t struggle to understand new concepts or complete homework correctly. But eventually it became hard for me to attend class and finish assignments. Having an IEP saved me. 504s are a lot easier to get (a lot less paperwork, less testing, less pushback from admin), but they’re not legally binding. If you want something concrete and all-encompassing, go for the IEP. IEPs are also really helpful when trying to get accommodations in college. You can also start with a 504 and switch to an IEP later. While we’re on the subject of school: remember that education is important, but school is not the end all be all of your child’s life. What should matter the most to you is that they end up safe and happy. I didn’t graduate high school; I took a proficiency test my junior year and dropped out. It was the best choice I could’ve made at the time, but it was still tough for my mom. I ended up going to college, and now I have a pretty solid job, but every kid will be different. Their mental and physical health is the most important. School is a huge huge huge stressor. Don’t make it harder for them than it already is.

Dating

God dating sucks enough on its own, but adding in chronic illness and disability just makes it a shit show. I don’t have a lot to offer on this other than you shouldn’t settle for anyone who doesn’t respect you, treat you with love and compassion, and accept every part of you for what it is. People will say rude shit. They’ll be nasty, fetishizing, infantilizing, dismissive. Some won’t be able to put up with all the things that come along with being ill. I sound like a broken record, but find a good therapist who can help you voice your needs and expectations clearly. Remember that you never have to go on a date if you don’t want to. Participate as you see fit. Throw it all out if you want.

I don’t have enough time to go into my tips for intimacy/sex and disability, but I’ll give you the highlights.

Communicate. Make it very clear what you’re able to do, what you’re interested in doing, and what you don’t want.

There are lots of ways to have sex. If you’re both having fun, being safe, and engaging consensually, then you’re doing it right. Don’t let abled bodied people tell you the way it should be done. There are lots of accessibility friendly toys to invest in, too.

As weird as it might sound, don’t be afraid to take breaks. Keep water near by. If you have POTS, keep salt or electrolyte tablets on hand. If you have to stop to vomit or go to the bathroom, don’t let it shame you. Go at your own pace and take care of your body.

Misc

Having seizures on a college campus: Most universities have a policy that if you lose consciousness while on campus, they have to call an ambulance. You are not required to ride in the ambulance. You can decline, and the paramedics will make you sign a form before leaving. If you’re still actively having seizures, then they’ll take you anyways, but you probably won’t be in any shape to try to decline. If you’re having seizures regularly, tell your professors. It’ll freak them the fuck out, so warn them ahead of time. It makes the whole thing a lot less awkward when you collapse in the aisle during a lecture. Related to that: communicate with your professors about all your accommodations and emergency health needs. They really honestly appreciate it when you talk to them about this stuff. Even if they have a big class and don’t remember you, it’s good to send them an email and introduce yourself. Hopefully, you’ve also talked to your college’s Disability Resource Center. If not, go do that. Now. (There’s a whole lot of shit that I have to say about campus accessibility and disability resource centers, but I’m not gonna go into it right now.) Also, wear your medical alert bracelet. I know they suck, but it sucks more for someone to be digging through your pants pocket while you’re seizing to try to find your wallet. And keep your emergency contact info pinned up somewhere in your dorm. I used to put mine on the fridge and point it out to my roommates at the beginning of term. It can take a while for RAs to pull yours up, so it’s best to make sure it’s easily accessible.

Remember that you do not function like a normal person. There is no wrong way to solve one of your problems. If you need to put a stool in your bathroom to sit at while you brush your teeth, do it. I got an extra tall stool to sit at while I cook at the stove because my wheelchair is too short. (Cooking in a wheelchair is another thing I could talk about forever.) If you need to wear a sleep mask on the bus because the light makes your migraine worse, do it. People can look at you funny all they want. Like I said, I rolled around my house in an office chair while I waited for a rental wheelchair. What I’m trying to say is find things that work and implement them, even if they’re non traditional.

Here’s what I pack in my bag for an ER visit: headphones, phone charger, book, zofran, Naproxen, water bottle, wallet with cash, socks, and sleep mask to block out the waiting room lights. If I’m expecting to be admitted, then I’ll pack more, but I try to keep it light if it’s just triage and a visit with the ER doctor. Sometimes I’ll stuff a granola bar or some almonds in there too.

My biggest tip for surviving hospital stays is to get out of your room (if possible). Go on walks around the unit. Some hospitals have little courtyards patients can sit in. If you’re in peds, go visit the rec room, even if it’s awkward. Their activities are usually meant for the younger kids, but it can be fun to connect with other people your age, and you’ll thank yourself later when you’re stuck in bed at 3am. Also, tell your friends to come visit you. Not everyone will be able to, but most people are happy to come hang out for an hour or two. It’ll help; I promise.

Clean your room every few weeks. Dear god, clean your room. I have trouble with executive functioning and finding energy to do housekeeping type stuff, but I get more depressed when my room is gross. So clean your room. Especially if you have hypersomnia/sleep excessively.

Don’t force yourself to use a pill organizer. I know everyone says it makes it easier, but I get overwhelmed when I have to refill it, and then I just don’t end up taking my meds. If it doesn’t work for you, don’t do it. If it does, then do it!

Don’t buy the self help books your therapist recommends unless you’re actually interested in reading them. It’ll just sit on your shelf and make you feel guilty for not being good enough.

Mental illness is tightly bound to physical illness. Try to be an active listener in your body. Sometimes, when I’ve been feeling really nauseous, my PSTD symptoms will get triggered over nothing, and it’ll frustrate the fuck out of me because it seems like it’s happening over nothing. I try to track when my emotional state is worse to see if it’s correlated to my physical symptoms. This helps curb the frustration and guilt. Sometimes it makes me dissociate more. It’s a balancing act. Just do your best.

Hobbies are so so so important. Make sure to give yourself time to work on them! And there are a million ways to adapt the activities you love if you’re having trouble, so don’t afraid to do some research. I know they have crochet hook grips for people with arthritis or loose grips, and there are super intense magnifying glasses for people who like to cross stitch and are having trouble seeing the tiny ass holes. I have a color blind friend who sends us pictures of paint to see if it’s the shade he wants. Very occasionally, you’ll come to the conclusion that there’s a hobby you can’t adapt. Let yourself be sad. I can’t hike anymore and it sucks. I can’t go tide-pooling either, and its not like if I just work really hard I’ll be able to do it some day. Life is shit, and sometimes you have to let things go. Be angry, be sad, tell people to fuck off if they try to turn you into inspiration porn, but also remember that there are lots of other cool things out there to try.

Going along with the hobby thing: take the time to learn ASL if you’re having trouble with your hearing or if you often go nonverbal. One of my friends had to get hearing aids last year, and we offered to learn with them, but they were hesitant because it feels like a non necessity to them. Something selfish that would take up all our time. If you think it’ll help, you should grant yourself the time to learn. Capitalism makes us think that we shouldn’t engage in activities unless we gain money or power from them, but that mindset will kill you. Your life will be infinitely easier if you learn ASL online with your partner or friends or siblings.

Look up Spoon Theory. It’s not a helpful metaphor for everyone, but most people in the community talk about it, so it’s good to be familiar with it.

Don’t be afraid to go out and find community! Find support groups, look up wheelchair sports if you’re into getting sweaty, brave the awkwardness of starting conversations with other patients in the clinic. I’m wholly and completely of the idea that humans are innately good. There are lots of interesting chronically ill/disabled people who’re looking for connection. Insurance companies and other medical entities rely on us feeling isolated, alone, and uniformed to continue making money and hold power. It’s important that we share with and support each other.

I know a lot of this is basic stuff, but it’s helpful to have reminders, and if you’re new to the whole song and dance, then it’s nice to get a sneak peak. There are a million things I didn’t get to, but this was what was on the top of my brain.

Also, I’m not the collective voice of every chronically ill person in the world. My experiences are not yours and they’re not everyone else’s. What works for me, might not work for you. Be kind.