How to be a Spoonie
A guide for the chronically ill
Hi! I’m Ameya, and I started this site to be an easy-to-reference information repository for living with chronic illness.
I have Ehlers-Danlos Syndrome (EDS), dysautonomia (Neurocardiogenic Syncope (NCS)), Mast Cell Activation Syndrome (MCAS), and a laundry list of other conditions. I’m neurodiverse, too (ADHD & Autistic)! I have dealt with health problems since childhood, but it was always dismissed until my 20s when I was finally able to start advocating for myself, and eventually I started getting answers as to what had been going on my whole life.
Finally getting diagnoses gave me both the vocabulary to start digging into the research myself, and it lead me to many online communities of people dealing with the same and similar things, where I admittedly spent far too much time rewriting the same things over and over to people asking the same questions I had had myself not so long ago.
Since I’m by nature super nerdy and enjoy helping others, this quickly developed into a special interest in both my conditions in general and life with chronic illness more widely.
Though this site is new and there isn’t much up yet, a lot of helpful material is in the works, and even more is already on the to-do list. So, thank you for stopping by, and please subscribe to be alerted when new posts go live! HTBS is also on social media: