Lisa

A year ago, @vanvangrinsven asked me if I wanted to make a documentary with her about being sick. She is a filmmaker, I am a theater maker; she is not sick (yet), but I am. I immediately said a resounding YES! We turned out to be a golden match in terms of collaboration and creativity; we build organically on each other’s ideas and inspire one another. @so.we.blended joined, and later the @omroepvpro did too. Now, with this top team, we have received a grant from the @nederlandsfilmfonds / @cobofonds to turn our extravagant ideas into a real film. Our research was supported by the crip community. We spoke to more then 75 sick people in a way that was accessible to them. I am incredibly moved by the urgency all these people feel to contribute to our film. That they, with their very limited energy, choose to talk to us and give us an intimate glimpse into their lives. This film will come into existence thanks to you!! And thanks to all the other sick people who have contributed to our research in some way. I feel that I stand on the sturdy shoulders of our sick ancestors, who have provided us with insights and wisdom through their Crip theory. And again, this knowledge has been brought to us mostly by you, dear sick community. I feel a great responsibility to represent people with PAIS (such as ME, long COVID, and other diseases) and to do so with integrity. I hope I can do justice to both the community and our ancestors. We are going to do our absolute best! But on Crip Time 😉

We are excited to share some fantastic news! Thanks to @cobofonds @nederlandsfilmfonds and @omroepvpro we have funding! Crip Time is a short hybrid documentary about young people with PAIS (Post-Acute Infection Syndrome) who have been largely bedridden for years. Having crossed from the “normal” world into the realm of chronic illness, they now live in crip time. From their bedrooms, they reflect on altered experiences of hope, time, creativity, and desire. Their conditions vary—some can still go outside, others can no longer speak. With medicine offering no clear answers or prognoses, the film collaboratively portrays their lives through interviews and poetic visual reconstructions. producer: @jetvanschie directors: @vanvangrinsven and @lisagroothaar archive researcher: @hosein.jlvnd DOP and animator: Teun Brock editor: Anna Magdalena Silva Schlenker production on development: @fokinluni #rotterdam #feed #criptime #filmproduction

Dit was misschien wel een van de mooiste én een van de zwaarste dagen uit mijn leven. HUILUN! Vandaag was, voor het eerst in de Nederlandse geschiedenis, het PAIS protest, pontificaal op het Malieveld. Om het grootste medische schandaal van de 21e eeuw te belichten. Mijn ziekte is wreed, maar het gebrek aan onderzoek, toegankelijke zorg en erkenning is nog veel wreder. Dat er vandaag zo veel mensen zijn komen protesteren, op het Malieveld én online, raakt me enorm. En ook zoveel mensen die ik lief heb. Mijn broer met een vlag, mijn moeder en tantes met een spandoek. Mijn vrienden met het mega kussenslopen spandoek, gemaakt door mijn zorgbuddies. Ik voel me zo gedragen en gesteund. En dat alles kon in toeschouwen vanuit mijn bed, in de armen van een van mijn besties Lisa P. We hebben samen een uur lang zitten janken. Man wat kwam dat binnen! Jaren van rouw en pijn. En wat was het een ontzettend sterk programma! Ongelofelijk goede sprekers en fantastisch gepresenteerd door @merel_muller En dat alles georganiseerd door mensen vanuit bed. De helden van @niethersteld en oprichter @guusliebrand die al maanden lang al spaarzame energie en meer hebben ingezet om dit mogelijk te maken. Ik ben jullie zó ongelofelijk dankbaar. Ik hoop dat jullie een niet al te grote klap hiervan krijgen. Ik denk aan jullie!! Mensen in de tweede kamer, het is nu aan jullie. @d66_insta en @cdavandaag , lezen jullie mee? Neem dit maar mooi even mee in jullie regeerakkoord. @groenlinks_pvda en @pvddamsterdam , ik hoop dat jullie kamervragen gaan stellen en moties gaan indienen. Laat dit het einde zijn van onze onzichtbaarheid. Als je het protest niet hebt gekeken, kan je de livestream nog terugkijken op hetpaisprotest.nl/livestream. Aanrader! Ik kruip even terug in mijn holletje en kom er volgende week wel weer uit. Joe! #PAISprotest #NietHersteld #LongCovid #MECVS #Lyme #Qkoorts #QVS #PostSepsis #MillionsMissing #NogSteedsNietHersteld

#pais people, please send us a photo of what you see when you rest. You can use any camera (phone is fine), if possible in landscape mode. @lisagroothaar and I are making a film and we think showing a multitude of ceilings might show the multitude of horizontal people out there. We were inspired by @samanthahahehe You can slide in DMs or mail them to [email protected] PAIS stands for post acute infectious diseases, like ME, long covid, post q-fever, chronic Lyme disease etc. We're researching this film together with @so.we.blended and @omroepvpro with @jetvanschie and @fokinluni #pais @longcovidnederland @niethersteld #longcovid #niethersteld #me #mecfs

English in comments! Tw: medisch trauma en dood Mijn ziekte wordt het grootste medische schandaal van de 21e eeuw genoemd. Ik heb het hier niet vaak over het onrecht dat mij en mijn lotgenoten wordt aangedaan. Maar om helder te zijn: mensen met ME (Myalgische Encephalomyelitis) en PAIS (post acute infectie ziekte) worden systematisch genegeerd, verwaarloosd, niet geloofd en soms zelfs gedood door het Nederlandse zorgsysteem. Waarom heb ik het hier niet met jullie over? Het doet me te veel pijn. De keer toen ik 13 was en met severe ME bij een psycholoog zat, die zei “dat ik niet ziek was, maar dat het in mijn hoofd zat.” De keer dat ik in de kleedkamer van de fysio in elkaar zakte en niet meer kon bewegen, en de fysio de volgende keer nog harder wilde trainen. Het idee dat ME opgelost kan worden door “mind-set verandering” en conditie opbouwen zit diep ingebed in de Nederlandse gezondheidszorg. Dit komt door een gefraudeerd onderzoek in de jaren 80, wat blijkbaar valse resultaten naar buiten had gebracht. Er is ondertussen allang bewezen dat conditie opbouwen extreem gevaarlijk is voor mensen met ME, en ze er juist permanent van achteruit kunnen gaan. Er is allang bewezen dat ME een ernstige multisysteem ziekte is, met een van de laagste kwaliteiten van leven. Maar toch is het hardnekkige idee blijven hangen dat je met positief denken wel beter zou worden. Dit moet nu afgelopen zijn. Long covid, waarvan de helft van de mensen ook in de categorie ME vallen, heeft wel iets veranderd aan deze stigma’s, maar heeft vooral deze vooroordelen geërfd van de grote broer/zus ME. Hierdoor is er nauwelijks geld voor onderzoek. Terwijl ondertussen bijna een half miljoen mensen in NL long covid heeft, en long covid nu de meest voorkomende ziekte is onder kinderen. Kinderen! Op 30 november is het allereerste (naar mijn weten!) PAIS protest ooit in Nederland. Dit is onze kans om de overheid te laten zien dat het menens is, en dat er meer geld naar research moet gaan. Want verdomme, ik wil gewoon leven. Ik wil niet meer ziek zijn en ik wil hier zeker niet aan dood gaan, zoals zoveel van mijn lotgenootjes. Er moet een geneesmiddel gevonden worden!! Verder in comment.

Today was the biggest protest in 20 years in The Hague! The situation has never been as severe as today. I scream from the top of my longs: stop this genocide. @minpres are you listening to the people? Is this what democracy looks like to you? I want to thank @oxfamnovib and @the_rights_forum and others for organising the protest today. I want to thank everyone who showed up today, in The Hague or within your capacity from your home (I see you!!). I want to thank the protesters from the first hour and the resilience of the Palestinians. They teach us what humanity looks like. #disabledmaker #disabledartist #sickart #sickartclub #bedart #nietinmijnnaam #rodelijn #wijtrekkeneenrodelijn #bedinforpalestine 📷 by @rolandmaas #imagedescription first two photos is me lying down in the middle of my bed, wrapped up in a long red cloth. I hold up a sign with “bed-in for Palestine”, on the first photo with the sign on my belly, on the second holding it up with my arm stretched. I’m a white woman with a dark blond bob and banks, and red lipstick. Photo 3,4 and 5 you see me standing on the balcony of a 2 store house, with a long red cloth draping down from the balcony. Photo 3 is zoomed out, so you see more surroundings, photo 4 more zoomed in and photo 5 you see only the balcony and me.

Intimacy and sexuality can exist in a lot of different ways, forms, shapes and sizes. It’s different for every body, every day and even every minute. What’s it’s about for me is finding what feels good in your body. What brings you pleasure, what brings you joy. Pleasure is a spectrum, in my opinion, with on one side sensations like stroking your cheek, and in the other side, well, orgasm! Key is to explore all the gems you can find in between. I use different breathing techniques and visualisations to spread pleasure through my whole body, to let it energise me, ease the physical pain and to connect to my body. I’m honoured that my work “Disabled bodies are loveable” is on the cover of MEdium magazine, of @mecvs.nederland . It also features a wonderful article of Karin Swanenberg, where she interviewed me and 3 other people with ME about this theme. Do you wanna ask me something about this subject or share your own experience? Share it down below or slide in my DM. #videodescription I’m in my bed, talking directly to the camera and showing the magazine cover. I’m a white woman but dark blond hair with bangs. My pillow is white with colourful flowers, and I’m wearing a brown capuchon.

De maart-uitgave van ons kwartaalblad MEdium valt deze week weer bij onze donateurs op de mat en heeft als thema: ‘Intimiteit en seksualiteit’. Je leest onder andere over: > Ervaring: met ME tussen de lakens > Relaties: de kunst van het liefhebben > Interview met arts-seksuoloog Hanneke Bolt > Onderzoek: wat is de X-factor van PEM? > In gesprek met minister Agema > Verder is er natuurlijk veel meer te lezen, zoals columns, een boekrecensie, boekentombola en een puzzel. Wil je ook graag ons tijdschrift thuis ontvangen of digitaal lezen? Meld je aan als donateur en profiteer meteen van alle andere voordelen, zoals gratis vier informatiebrochures naar keuze. Kijk voor meer informatie op onze website (link in bio). #MyalgischeEncefalomyelitis #ChronischVermoeidheidsSyndroom #CVSME #MECVS

Let’s talk about food! I think it’s so unfair that I still have to eat 3 meals a day, although it costs me so much energy. I tried to go to 2 meals a day, but my specialist didn’t let me because that way I wouldn’t get in enough nutrients. So annoying! I have around 15% of the energy of an average healthy person. But I still have to eat just as often? That is so cruel. Don’t get me wrong: I love food. I love eating. Eating and drinking are sensational highlights of my day, and now I’m sick I can enjoy eating more than ever. But it takes around 50% of my activity energy each day! Because eating and digesting is exhausting. And i am not even preparing the food by myself 90% of the time: my parents make it for me and bring it upstairs to my bed. My goal is to make more of my food myself, because I love cooking and I miss it so much. And when I return to Amsterdam, I won’t have my parents to care for me 24/7. But how to prepare my own food with so little energy? I wish I could make healthy and delicious food in just 5 minutes. My specialist advices me to skip the delicious part and to see food as fuel. But isn’t it unfair that I have to take something away that I am enjoying so much? Eating healthy is very important to me, because it feels like one of the most direct ways how I can have influence my health. Ready to go meals are convenient, but they are not as healthy as home cooked meals. So should I go for delicious, healthy or easy? Fellow spoonies, what is your take on food and preparing food? Do you have any golden spoonie advice? How do you manage to feed yourself? Would love to learn from you. Ps: I am SO lucky that I don’t have any food allergies. I can eat everything I want. Although I don’t drink alcohol, coffee and tea, and try to eat as little sugar as possible. #imagedescription a collage of 9 photos of food with a pink/ red background, al taken in bed. #disabledmaker #disabledartist #sickart #sickartclub #bedart

Did I have energy to do this photo shoot? No. Did I have lots of fun doing it? Yes. Does my body hurt now everywhere very much? Yes indeed, thank you for asking. Nothing is for free when you have ME or Long Covid. Four months ago a friend of mine got covid. She is now already 3 months bedbound. She was perfectly healthy before. Covid isn’t just “a flu”. It can turn anyone, yes also you, into a chronically ill person. I’m not saying this to scare you, but to be realistic about it. And to be careful! If we are careful together, less people will become disabled and the world will be a more accessible place to live. So, mask up, isolate when having symptoms and talk about covid! It’s the disability community that is now doing all the work, so that YOU don’t become sick. Isn’t time to do this together? And meanwhile, there is still barely any money for research for this mass disabling event called Long Covid. Lots of GP’s still don’t have a clue what to advice and people care getting gas lighted all the time. M.E. and other post virale illnesses have been medically neglected for decades already, and now with long covid it looks like history repeats itself. We should not let this happen. Talk about it. Read about it. We need you as an ally. PS: people were harmed during this photo shoot (me). Don’t try this at home when you are supposed to be radically resting. Shout out to @berlin_buyers_club for starting this action and making the signs, and to @niethersteld for bringing the action to the Netherlands. #niethersteld #notrecovered #berlinbuyersclub #longcovidawarenessday2025 #5yearslongcovid #imagedescription a photo shoot of 9 photos and 1 video, of me on my bed holding a sign that says: “long covid is a mass disabling event. We need help now”. I’m a white wonen with short dark blond hair, wearing a light pink soft suit with fake fur and a hat with panter print.

You guys.. I went to a museum!! You know how much I love art, so this was a dream come true. We went to Ruurd Wiersma Museum in the north of Fryslân. He painted on everything: his shoes, milk cans, vases and bottles and a bed. And: he painted the four seasons on the walls and the ceilings of his house. Gorgeous! I absolutely adore his style; it’s so unique and colorful. You really see the world through his eyes: things or people that he liked he painted big, things or people he didn’t like he painted small. We had a private tour so there where no other guest than us. Big shout out to the Ruurd Wiersma Museum for accommodating it to my needs ♥️ I felt really welcome. #videodescription you see a 360 degrees turn in a room. The walls and ceiling have been entirely painted in colourful scenes. At the end of the video you see me in my wheelchair: a white woman with a black coat and a pink baret. #ruurdwiersmahûs

🌼 Which words 🌼 Severely ill, chronically ill, disabled, handicapped, crippled. I taste the words on my lips. Which ones do I like? Which ones belong to me? Which one do I own? I have a dynamic disease. I got sick for the first time when I was 13. I have known many years of being severely ill, and also years of being not symptomatic. That makes me hesitant to claim these words. Because are they as dynamic as my disease? Can I be disabled now and in a few years not anymore? Which words suit you, and why? #imagedescription a selfie portrait of me laying in bed. I coloured yellow stars around my eyes, like daffodils, and I painted my lips yellow. I am a white womanly with dark blonde hair. I’m wearing a red sleeveless blouse. My bedding is white with colourful flowers. #disabledmaker #disabledartist #sickart #sickartclub #bedart #faceart