Every time Isobel has a medical test done, she has her fingers crossed that something will come back abnormal. She has been living with flare-ups on and off throughout her life, starting after a severe viral infection when she was 9 years old. Her symptoms include extreme fatigue, dizziness, brain fog, joint pain, muscle cramps, patches of burning red skin and more. She has received several diagnoses including myalgic encephalomyelitis (chronic fatigue syndrome), postural orthostatic tachycardia syndrome (POTS), vestibular migraines and small fiber neuropathy, but none of these diagnoses have led to meaningful treatment.
In this episode of the Major Pain podcast, Isobel talks us through her health journey so far. Her illness flared-up significantly after contracting COVID-19 at the beginning of the pandemic, and she has required the use of a wheelchair since then. She discusses how grateful she is that the wheelchair is currently increasing her quality of life, in contrast with her first period using a wheelchair as a teenager when the emotional impact of needing a mobility aid was overwhelming. Her frustration with the lack of disability representation online led her to create a TikTok series called ‘The Ramp of Approval,’ where she rates the accessibility of venues throughout London. Although she is still hoping to uncover a driving force behind her chronic illness, she is currently directing her focus towards living the fullest life possible within her limitations, since she does not want to write off any future chapters of life.
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This episode of Major Pain is supported by a creator grant from the Stimpunks Foundation. This is a nonprofit organization providing mutual aid and human-centered learning for neurodivergent and disabled people. Check them out online at https://stimpunks.org/