YOU DESERVE A SPACE TO FEEL RAGE. 🌿I’ve been trying to write about the rage and despair I’ve been feeling for weeks, but I haven’t been able to find the words. I’m new to anger. For decades, it wasn’t safe for me to be angry, so I’m just now rediscovering the feeling. I can’t quite grasp my rage, but I feel strongly that we need a place to express it. If you’re sick/disabled and pissed as hell, please share your feelings below! I will delete comments that invalidate the feelings of sick and disabled people. 🌿It’s okay to be angry that now when they can see how lonely, how left out we have been, they turn away. To rage now that they’ve shown their hand: they were capable of providing access the entire time. They just didn’t care to, until it affected them. Until it was their lives shoved into boxes and tucked away, until they too couldn’t see friends, until it was their relatable suffering. Not the shame of illness, but the virtue of preventative wellness. 🌿I think my feelings boil down to being left behind. To having able people come so close to understanding how small and lonely our lives have been, and choose to look away. To have our governments declare they are prioritizing the vulnerable, and then ignore sick, disabled, and elderly people. To be reminded that our lives are considered collateral damage. I don’t know how to live with this, but I know step one is talking about it with our communities. 🌿#ChronicIllness #InvisibleIllness #ContestedIllness #MECFS #PwME#POCwME #DysautonomiaAwareness #Undiagnosed #InvisibleDisabilities #disability #DisabilityStudies #DisabilityRights #DisabledAndProud #DisabilityAdvocate #Ableism #crip #SocialWork #resistance #feminism #sociology #biopolitics #sick #SickGirlsClub #illness #spoonie #SpoonieLife 🌿ID: A solid orange background with a pink and purple watercolour splotch in the center. Over the splotch is the text, “You deserve a space to feel rage” in small caps. (at Toronto, Ontario) https://www.instagram.com/p/B-mvCScj7iu/?igshid=1fjhehitx4cxl

COMPLICATING NO CONTACT WITH CULTURE. If anyone else in my life refused to accept that I am sick and disabled, insisted I act as if I am not, was consistently dismissive of me, and was controlling to the point of making decisions on my behalf, I would cut them out. But I don’t want to cut out my family. I love my family, I love the raucous parties and the hoards of screaming children. I love having lumpia and roast beef on the same plate, with vinegar chili sauce on the side. I love the short hand I have with my cousins, the understanding that comes with having shared our childhoods. I hate our toxic family culture: the lack of communication, the strict hierarchy of the generations, the way we can name abuse as it happens but strip it from our minds immediately after. While I brace myself for our interactions, I also find that other parts of myself relax. In our white dominated society, I take on the role of #ModelMinority or the Exotic Ethnic. I find myself explaining my otherness constantly, if not tucking it away to be more approachable. Among other Filipinx people, I question whether or not I am Filipino enough. With my family, I am exactly the kind of Filipino I need to be. If I give up my family, I give up nearly all of my connections with my culture and my childhood. I’m in an interracial relationship! My only family culture would be one I do not share. I value my family, even if they only value a certain version of me. Maybe that’ll change in the future, (I suspect it will) but for now, I’m holding on. #Asian #AsianDiaspora #AsianMentalHealth #Filipinx #Filipino #ChronicIllness #InvisibleIllness #Sick #SickGirlsClub #Spoonie #POCwME #Disabled #DisabledPOC #InvisibleDisability #DisabilityAdvocate #MedicalAbuse #Ableism #Crip #Trauma #ToxicPeople #ToxicFamily #IntergenerationalTrauma #ComplexPTSD #FamilyTrauma #Queer https://www.instagram.com/p/B7oU0ZyAqQN/?igshid=18o9ero8y70zo

MY NAME IS KAIA. You used to know me as Kat! I’m so relieved and very very happy to be able to say that my name is now legally Kaia Mayari Arrow. EEEEEEEEEEEEEE!!! ⠀ ⠀ Kaia means stone, willow, and sea. “Kaya” in Tagalog means “to be able to.” Mayari is the Pampangan goddess of the moon, equal rule, and revolution. ⠀ ⠀ ID: A desaturated photo of Kaia and Bunny behind a text banner reading, “EEEEEEEE! MY NAME IS KAIA. A very special announcement!” Kaia is laughing and holding up Bunny in front of a patch of tall grass. ⠀ ⠀ #ChronicIllness #InvisibleIllness #ContestedIllness #MECFS #PwME #POCwME #DysautonomiaAwareness #Undiagnosed #InvisibleDisabilities #disability #DisabilityStudies #DisabilityRights #DisabledAndProud #DisabilityAdvocate #Ableism #crip #SocialWork #resistance #feminist #biopolitics #sick #illness #spoonie #SpoonieLife (at Toronto, Ontario) https://www.instagram.com/p/CHtGSEUjc88/?igshid=6lzpuettmfc

LET’S TALK ABOUT COVID LONG HAULERS. If you’re in ME/CFS communities, no doubt you’ve seen an influx of new characters. They write that they got COVID-19 and never recovered, and their research led them to us. They ask, “how do you guys cure this?!” and “how do you get doctors to listen to you?!” Prominent public health figures are talking about how long haulers might have “something very similar to ME or chronic fatigue syndrome.” ⠀ ⠀ Sick people, it can be hard to see people who have been ill for months receive more recognition than we have gotten in decades. I hear you. I feel that frustration and that bitterness too. But long haulers are not the enemy. Long haulers are new kin, who are also learning that it is possible to get sick and stay sick and not have anyone care- just as we did however many years ago. There is great risk of harm here for all sick people, but that harm will largely be perpetrated by the medical industrial complex. ⠀ ⠀ We need to direct our frustration towards the systems that have failed us, with a goal of prompting change. I am furious with the medical industrial complex that has thrown us aside rather than admit they aren’t omniscient. I am angry with governments and funders that have refused to fund research that might give us all answers. I am not angry at long haulers, who are wrestling with the concept of chronic illness and medical abuse/neglect in the midst of a pandemic. I am afraid, I feel bitterness, but I welcome long haulers to the chronic illness community. I call for unity, not division.⠀ ⠀ PS: Since COVID disproportionately affects people of colour, in part due to inaccess to resources allowing people to physically distance, here’s your reminder that long haulers will not be solely affluent white women. ⠀ ⠀ #ChronicIllness #InvisibleIllness #ContestedIllness #MECFS #PwME#POCwME #DysautonomiaAwareness #Undiagnosed #InvisibleDisabilities #disability #DisabilityAdvocate #Ableism #crip #SocialWork #resistance #feminism #sociology #biopolitics #sick #SickGirlsClub #illness #spoonie #SpoonieLife #CovidLongHauler #CovidLongHaulers #CovidSurvivor #CovidRecovery #Covid19 (at Toronto, Ontario) https://www.instagram.com/p/CDCeMh3DKmU/?igshid=1b2uqr44b4iw7

DEAR DISABLED COMMUNITY BUILDERS: YOU’RE DOING ENOUGH. This week I whipped myself into a fury over how much I SHOULD be doing to help my communities. I kept seeing calls for help, calls I could fulfill- if I were not disabled. I told myself, “everyone is stepping up, you have these skills, you can step up too.” Then disability smacked me in the face, and I had to face the reality. As much as I feel both a duty and a desire to contribute more, it’s not in the cards. I don’t have any more energy or emotional resilience that I had before our community needs grew. 🌱 I know you do too. I know you also want to give more, and maybe you too are finding that you don’t have more to give. As @unwellunlimitedly reminded me, we are having to take on more work/anxiety/fear/etc on top of our health issues. @sonyareneetaylor says we are not meant to do the work alone. It’s just not possible, if you keep trying to create change by yourself you will burn out and nothing changes. We must share both the work and the joy of building our communities. 🌱 So to you, dear community builder, I have this to say: We can only do what we can, and no more. Trust in your communities to come together. Trust in other people to do what they can, and no more. You are doing enough. What you can do is, and must be, enough. You do not have to produce to be worthwhile. I value your existence. I value your presence here. I value your humanity. We’ll get by alright. 🌱 ID: A young Asian woman wrapped in a mustard yellow raincoat tilts her head back to feel the wind on her face. Lake Ontario ripples in the winter wind behind her, under cloudy skies. 🌱 #ChronicIllness #InvisibleIllness #ContestedIllness #MECFS #PwME#POCwME #DysautonomiaAwareness #Undiagnosed #InvisibleDisabilities #disability #DisabilityStudies #DisabilityRights #DisabledAndProud #DisabilityAdvocate #Ableism #crip #SocialWork #resistance #feminism #sociology #biopolitics #sick #SickGirlsClub #illness #spoonie #SpoonieLife #CommunityBuilding #Caremongers (at Kew Beach) https://www.instagram.com/p/B-Xgu8MH7uk/?igshid=ldq6zgox38o6

PSA: DON'T WAIT TO USE YOUR #EPIPEN. I recently had my first anaphylactic reaction in 5 years. In the interim, I’d seen an allergist and been informed that it was imperative that I use my EpiPen as soon as I knew I was experiencing #anaphylaxis. This was news to me, because throughout my youth, I’d been chastised by the ER at Scarborough Grace Hospital for using my EpiPen too soon. Twice, they sent me home to have rebound reactions. My parents were also unhappy that doctors were yelling at me, so I started waiting. And I believed that this was normal: I would wait to use my EpiPen, and have trouble breathing, develop wetness in my lungs, and have to receive nebs (breathable steroids) with continuous monitoring for hours after each reaction. It turns out this isn’t necessary at all. The EpiPen is very effective, that’s why it’s so widely used. If I use my EpiPen within minutes of exposure, it stops the reaction before it can affect my lungs. Within an hour, I’m back to normal (albeit at mild risk of rebound anaphylaxis). The ER in Scarborough was chastising me for using a life saving medication correctly, because by the time the doctor saw me, the epinephrine had done its job. DON’T WAIT TO USE YOUR EPIPEN. The staff at Mount Sinai reassured me at every turn that I had done the right thing by jabbing myself immediately. The nurses reiterated that I can tell the difference between an oral reaction and anaphylaxis. They used their expertise to validate my own, and made room for me to believe that I can trust myself again. #ChronicIllness #InvisibleIllness #ContestedIllness #MECFS #PwME#POCwME #DysautonomiaAwareness #Undiagnosed #InvisibleDisabilities #disability #DisabilityStudies #DisabilityRights #DisabledAndProud #DisabilityAdvocate #Ableism #crip #SocialWork #resistance #feminism #sociology #biopolitics #sick #SickGirlsClub #illness #spoonie #SpoonieLife (at Mount Sinai Hospital, Toronto) https://www.instagram.com/p/B76yd1DAXUO/?igshid=1vtq1g8mae4fl