Chronic and Invisible Illness
What You See
Cute Slides
Active web presence
Avatars and augmented reality
Past accomplishments
Well constructed arguments
Talented writer
Old photos or taken on good days
Well educated
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What You Don’t See
PEM
Brain Fog
Bed Bound
Dark Room
Assistance with basic hygiene
Unable to bathe regularly
Sensor sensitivity
Seizure episodes
Periodic Paralysis
Genital ulcers
Husbands and parents caregiving 24/7
Typing notes on phone
PA designs slides
Constant headaches
Fatigue
Nausea
Muscle Pain
Joint Pain
Sore Throat
TMJ
Neck Pain
Hay Fever
OI / pOTS
Mouth Ulcers
Temperature intolerance
Neuropathy
Muscle spasm
Unrefreshing sleep
Psoriasis
Hemiparesis
Memory Loss
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A slight modification on a classic post. invisible illness remains invisible even in severe ME and bedbound patients. We are the millions missing for a reason. Even when we may not be physically out in the world, our chronic illness is invisible, hidden by avatars, web presence, and carefully crafted posts.
I love being online. I met my husband through an online science fiction forum and have been in tech since I was 10 years old. On the internet, my illness is my story to share or to hide. I can have discussions with people as a respected Google and Wellesley Alum instead of "the sick girl."
I have so much respect for people who are extremely vulnerable on this platform and share the details of their everyday life. While I post occasional updates, that has never been my style. Instead, I choose to leverage my experience and empathy as a chronically ill person with myalgic encephalomyelitis and Behcet's disease to create arguments and slides that I hope can help people to unlearn ableism and become allies and activists for Disability Justice.
I absolutely could not create the content I do without the help of @kamilljoana22 my PA, my incredible husband Hugh, and the financial support of my parents. The fact that my basic needs are met without requiring my limited energy allows me to spend almost all my spoons on typing into my notes the arguments that I am so grateful to have resonated with all of my lovely followers. This is a huge privilege that most people with MECFS particularly severe patients do not have.
To be clear, the second slide still fails to fully capture all of my symptoms and impairments and doesn't even try listing my diagnoses. But I hope it provides a small glimpse into the reality of the girl behind the curtain. To everyone who leaves positive comments or messages me saying you benefited or learned from my slides, thank you. Your words mean so much and are a huge part of what keeps me motivated to keep researching and writing. To healthy allies who share my posts outside of the chronic illness community, thank you. Your support is essential to making change.
