Jameisha Prescod is a London-based activist who lives with lupus, Raynaud’s, and femeroacetabular impingement (FAI); she is also waiting on possible diagnoses of endometriosis and Celiac disease. She is the founder of You Look Okay To Me, an online platform for pain and chronic illness that is chock-full of content about invisible illness, disability, and their roles in tech, art, culture…and everyday life. In this episode, Jameisha sits down with Lauren to talk about gaslighting in the medical industry, and how this has affected her not only as a woman, but also as a woman of color; she also talks about her journey to diagnosis, self-advocacy, and her experience of workplace discrimination. At 23, Jameisha is not only wise beyond her years, but she is also incredibly open, honest, and real. She has founded a thriving community and regularly produces entertaining videos about living with chronic illness and disability, which appeal not only to the Spoonie community, but also to those seeking perspective and understanding.

Join us as Jameisha shares…

- that she first started showing symptoms at 16

- that her doctors dismissed her – and her symptoms – at first; medical providers presumed she had a psychological disorder before they took her physiological symptoms seriously

- that, where the NHS failed her, she sought assistance from a private health insurer

- that it was on her to bring resources and information to her doctors in the NHS

- that it wasn’t until she made a complaint to the NHS that she was referred to a top rheumatologist with a specialty in lupus, Professor David D’Cruz

- that she’s been discriminated against by medical providers not only for being female, but also for being a woman of color (especially with regard to her reproductive health), and for presenting as younger than she is

- the prevalence of unconscious bias in the medical industry, especially with regard to women’s reproductive health

- that as a child, she thought her Raynaud’s was cool because her fingers would change color!

- that many of her illnesses have a genetic link

- the “ping-pong blame” of having multiple chronic illnesses: that medical providers often blame one better-known illness for another’s symptoms

- that she often has to drop her well-known doctor’s name to be taken seriously by medical providers; and the irony of requiring a man’s name to legitimize her symptoms

- the relief of being vindicated in a diagnosis

- the frustration of having to fight with doctors

- how she’s learned to be her own advocate, and how she advocates for friends

- reflections on a talk she recently attended with the founder of the health app Babylon, and how AI has less inherent bias than a human medical provider is apt to have

- that her entire family works as advocates for one another – from her grandparents to her mum

- the importance of speaking up for your needs. While this advocacy started for her at the hospital, it now extends to the workplace and in social situations. She is no longer a “keep calm and carry on” type of person

- the BBC Extend scheme, and how her employers work entirely around her accessibility needs

- that she was fired from her previous job for being disabled – which is entirely illegal; but she opted out of taking legal action

- a discussion about disability discrimination laws in UK workplaces

- what inspired her to start You Look Okay To Me

- how she had to adjust her career aspirations around her physical limitations

- that she is aware of both able-bodied and disabled audiences when producing her content, keeping both in mind to keep a light, educational tone without being “finger-waggy”

- that her aim with You Look Okay To Me is to create an open space for learning and comfort

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com

021: Jameisha Prescod, Founder of You Look Okay To Me, on Living with Chronic Illness and Disability in the UK 01:07:44 Share

Uninvisible Pod with Lauren Freedman

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021: Jameisha Prescod, Founder of You Look Okay To Me, on Living with Chronic Illness and Disability in the UK