Today marks one year of my sibling being bedridden from long covid (not leaving bed for any reason). They are part of the #millionsmissing from post-viral conditions. www.meaction.net

My sibling is recovering a little-- they can use their arms and legs more, and tolerate a bit more conversation. They still can't read, watch TV, listen to music, or do many more things you and I take for granted.

#SciArtSeptember Day 9: vanishing • The term #MillionsMissing is used for #MECFS advocacy since most people with the disease—like myself—rarely have energy to leave their homes. My #Sciart #embroidery body map (2016) illustrates the invisible symptoms I experienced at the onset of ME/CFS.

2025-8-9 Is this MCAS anaphylaxis, anxiety, or anaphylaxis from anxiety?

I almost didn’t want to share this one, because I’m in a bit of a nervous state, and I was worried about the people who think people with Long Covid are psychological malingerers, etc. When I had to leave work, and filed for US Social Security Disability, I kept my Generalized Anxiety Disorder out of my initial application, afraid of getting the dreaded “just anxiety,” dismissal that many complex chronic illness kin are familiar with. (I was later told this was a bad move, and to definitely include all mental health and neurodivergence things, which I did for the ongoing process.)

Even as I’m having less anaphylaxis risk, it’s taking time to recover psychologically. I told my therapist how I felt like I backslid over a decade in mental health work overnight from the first recent anaphylaxis episode. She kindly said that while I might feel as scared and threatened as I often did back then, that the trigger was different. I was not feeling that anxious about an email, I was feeling that way about a literal life and death situation, one which I still don’t fully understand the triggers of.

A decade ago, de-stigmatizing mental healthcare was really important to me too. Now, I’m especially aware of how much these issues intersect, so heck yeah, publishing the medical art about anxiety.

Lastly, I wanted to include few examples of the ways in which these issues intersect. These are absolutely the tip of the iceberg.

  • Postural Orthostatic Tachycardia Syndrome, or POTS, is a form of autonomic dysfuntction (when things your body normally does automatically stop behaving normally), and is a part of my Long Covid. It involves a high heart rate, and often symptoms like room spinning or lightheadedness, trembling or shaking, shortness of breath, and poor bloodflow. POTS is often misdiagnosed as anxiety, and The Disabled Ginger wrote about it here.

Theories that diseases are caused by mental states and can be cured by will power are always an index of how much is not understood about the physical terrain of a disease.

Moreover, there is a peculiarly modern predilection for psychological explanations of a disease, as of everything else. Psychologizing seems to provide control over the experiences and events (like grave illnesses) over which people have in fact little or no control. Psychological understanding undermines the ‘reality’ of a disease. That reality has to be explained.

Susan Sontag, illness as metaphor (New York: Farrar, Straus and Giroux, 1977), p. 55.

p.s. mental health is physical health and physical health is mental health. you got a literal brain in your body and all of your body is involved in everything that you do. please take care of yourselves and each other. <3

https://www.illmarks.com/2025-8-9-is-this-mcas-anaphylaxis/

#allergy #anaphylaxis #anxiety #art #autoimmune #bodyHorror #bodyMapping #chronicIllness #gad #generalizedAnxiety #immune #longCovid #longcovid #mastCell #mastCellActivationSyndrome #mastCellDisease #mastcell #mcas #medart #medblog #medicalArt #medwriting #mentalHealth #MillionsMissing #pwLC #pwme #SciArt #sciblog #sciwriting #symptom

A trip to IKEA destroyed my life, or, #millionsmissing and the moral corruption of normalcy/Une virée à Ikea a détruit ma vie, ou Millions Missing et la corruption de la normalité

Article en anglais sur le covid long, du 10 Juillet 2025

https://thisisrachel.substack.com/p/a-trip-to-ikea-destroyed-my-life

« Le retour au "normal" de 2019 est un culte de la mort, un rêve irréaliste ; ce n'est une option viable pour personne dans le contexte actuel de pandémie. HandicapéEs ou non, celleux qui ne prennent pas de précautions contre le #COVID-19 vivent en sursis. »

#ARRAVeille

8/14

A trip to IKEA destroyed my life, or, #millionsmissing and the moral corruption of normalcy

“I think you need to send that feedback to Ikea.”

naked and stunned at the end of the world