#contestedillness

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

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

WHEN BALANCE IS IMPOSSIBLE As #sick/disabled people, we are constantly being told to "seek balance". We're told that we can stop the cycle of living and needing to recover from it by doing less in the day-to-day. I've spent years struggling to reach this ideal, and today, I'm giving myself permission to stop struggling. It is ok if my balance is an ebb and flow rather than smooth waters. It is ok that I cannot live my life small enough to fit within the confines of my illness. It is ok that my balance is a changing one. It is not possible for me to live my life and not suffer consequences for it. My energy envelope is small enough that I cannot reduce my life and feel it worth living: even if all I did was cook one meal a day and rest, I would be living far outside of my energy envelope. I need more. Life is more than staying clean and fed, and to do that, I can accept that my balance is one of give and take. #chronicillness #invisibleillness #contestedillness #chronicfatigue #mecfs #undiagnosed #invisibledisability #disability #disabilitystudies #crip #socialwork #resistance #feminism #sociology #biopolitics #sick #sickgirlsclub #illness #spoonie #spoonielife (à Toronto, Ontario) https://www.instagram.com/p/B475m76AmAA/?igshid=1w37drx17vsh6

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

BEING THE KIND OF DISABLED I AM, AND NOT THE KIND OF DISABLED PEOPLE EXPECT ME TO BE. In the past two years, I’ve used my cane while wearing heels twice.  I love dressing up, but I’ve been worried about people judging me for using a mobility aid while wearing heels.  As a young Asian woman, I don’t look like the kind of person others expect to be using a cane. I get enough harassment for that without also being disabled in a way people don’t expect.  So I walk slowly all the time, lean on the car when I get out of my wheelchair, and don’t ever wear heels. I perform the kind of disability that people expect to see. A few weeks ago, my therapist told me, “If you change your behaviour to soothe other people, you are taking on their emotions.”  My main issue is fatigue, it’s perfectly fine for me to wear heels for short periods of time or while seated. By not wearing what I want to wear even when it’s safe for me to do so, I’m adjusting my behaviour to suit the assumptions people are making about me.  And worse, I’m letting their assumptions suppress the way I want to live my life.   To be completely frank, failing to conform to people’s preconceptions of what disability looks like is not risk-free.  It is a risk I am PRIVILEGED to take on, because I have an excellent support system and access to a good therapist. I have the time and the mental space to tackle the ongoing trauma brought on by ableism.  My hope is that if enough people who are able to can be the kind of disabled they are, and not the kind of disabled people expect, we can change the expectation. #ChronicIllness #InvisibleIllness #ContestedIllness #ChronicFatigue #mecfs #undiagnosed #InvisibleDisability #disability #DisabilityStudies #DisabilityRights #DisabledAndProud #DisabilityAdvocate #crip #SocialWork #resistance #feminism #sociology #biopolitics #sick #SickGirlsClub #illness #spoonie #SpoonieLife (at Nathan Phillips Square) https://www.instagram.com/p/B63oxHUgjke/?igshid=wwcrl1p08wbx

MAINSTREAM CARE SYSTEMS PERPETUATE TRAUMA. Recently, I've been tackling some of my trauma responses with exposure and response therapy.  One of my triggers is fear of anger: when I think someone is irritated with me, I become absolutely terrified.  So I've been sitting with that feeling, telling it, "Yes, I know I'm scared right now.  At one point, I needed to be hyperaware of anger.  I am worried now because that helped me in that past."  Pause.  "I am safe now.  I do not need to be afraid.  It is okay that I am afraid now, and I am going to be kind to myself as I learn that I no longer need this fear."  This is a method that I've used extensively with my #OCD and obviously with my trauma work.   But it doesn't quite make sense for dealing with #MedTrauma and the processes required to deal with accommodations.  In my experiences, I can use exposure and response therapy to unlearn reactions I have to safe situations.  I cannot tell myself that the next doctors appointment will not result in someone denying my experiences.  I cannot tell myself that the next time I request #accommodations, I will not be treated with hostility.  I cannot use exposure and response therapy to teach myself that medical interactions and accommodations are safe, because they are not.  Every exposure carries risk of retraumatization.  And even as the trauma builds on itself, we must continue to submit ourselves for retraumatization by the #MedicalIndustrialComplex in order to receive care.          In addition to validation, I take from this a lesson.  It is okay to be kind to yourself as you deal with the systems of care that sustain and traumatize us.  Be gentle where care providers are not.  Take time to acknowledge that negative care interactions take a toll on us, and recognize the important work of resilience and resistance you do to keep going.     #chronicillness #invisibleillness #contestedillness #chronicfatigue #mecfs #undiagnosed #invisibledisability #disability #disabilitystudies #crip #socialwork #resistance #feminism #sociology #biopolitics #sick #sickgirlsclub #illness #spoonie #spoonielife https://www.instagram.com/p/B2FHCSYAv_C/?igshid=313ir9wcjque