I hadn’t heard of “post-viral syndromes” before, but all I knew was I was exhausted all the time, weak, and in pain. My fainting spells came much more often, and this time, they were preceded by the worst feeling I’d ever felt...

Friends and family didn’t understand why I was bursting into tears and collapsing after a chai latte or single glass of wine. Nor did any doctors I saw: the endocrinologists, rheumatologists, and cardiologists all said they didn’t know what was happening, or that they couldn’t help me.

...Ultimately, it was community that saved me.

I’ve spent a lot of time tracking my triggers and changing what I’m able to in order to prevent flares. This is a full-time job in itself, coupled with the daily grief of losing the life I wanted for myself and the overwhelm of what I might want my life to look like next. I won’t pretend that dysautonomia is some sort of blessing, but I am incredibly proud of the way I’ve tuned into my body and learned to listen to myself. My needs are worthy of care, my voice is worth being heard, and “not trying hard enough” was never even part of the equation.

Having a disability and chronic illness has put me through more in my 24 years than most people have to go through in their lives. I’ve dealt with more hospital visits than I care to count, hundreds if not thousands of doctor appointments, getting a port, getting a feeding tube, losing the ability to eat any food due to allergies, becoming allergic to antihistamines, and having anaphylaxis over and over again. Despite all the negatives it has made me incredibly resilient and strong, giving me a community of people who can understand each other on an almost indescribable level, and I truly could not imagine my life being any different.

The support of Los Angeles Dysautonomia Network (LADN) has been vital in my progress and improvement. This community gave me the resources I needed to cope with my illness. Reflecting on my journey, I’m filled with gratitude for the support of LADN community members, and I’m so proud of the progress I’ve made – from being mostly homebound to eventually co-founding a non-profit and returning to my original career goals. I hope my story gives others hope that life with POTS—despite the limitations it can impose –can still be fulfilling, vibrant, and joyful!

It was difficult to grow up with dysautonomia. My complex health issues forced me onto a very different life path, one full of isolation, pain, and continual challenges as well as unexpected joys, triumphs, and eventually new, wonderful friends.