Complex multisystem diseases like Ehlers-Danlos syndrome express themselves differently in every patient. Different symptoms take you to different specialists, but there’s no one to look at your situation holistically, or who has the time to put it all together. There’s apparently a new approach called ‘Functional Medicine’ which tries to better this issue.

I’m reading Sarah Ramey’s ‘The Ladies Handbook for Her Mysterious Illness’. Part autobiography of her own experiences, part explanation about this whole cloud of mysterious illnesses from ME/CFS to Fibromyalgia to Ehlers-Danlos syndrome. It must sound like a terrible choice for anyone but those affected, but Ramey has great literary qualities and zero tendency to linger in self-pity and the injustice done to the patients. Really worth the read.