A Warm Welcome
I am a lot of things.
26 years old.
Deeply loved by my family.
Adored by my friends.
Doted on by my partner.
First to put up my Christmas tree.
Last to leave a party.
Comedic relief at family dinners.
Loudest to sing in the shower.
Happiest at happy hour.
And a laundry list of medical issues.
Living with chronic illness has been the most challenging part of my human experience thus far. I have Limb Girdle Muscular Dystrophy 2B: a progressive muscle-wasting disease that affects the *teensiest* portion of humanity. An orphan disease. There is no cure for it yet, and the atrophy has progressed quite a bit in my twenties. In a sense, it’s me against the clock. I take my medication for the pain. I do my physical therapy. I cross my fingers. I wait for a cure.
It’s nature’s cosmic joke that one medical issue begets another — and another. And the path to discovery is the pulling of a loose thread, continuing to uncover more problems caused by the ones that came before them.
I've become a frequent visitor of doctors' offices and hospitals, often leaving specialists baffled as they scroll through my iPhone albums, each photo timestamped with a trail of symptoms. They’ll scratch their heads, order a blood test, send a referral, rinse, and repeat. Chronic kiddos — I know you know this cycle well.
(Don’t you wish there was a BOGO sale on medical co-pays?)
When you have a chronic illness, doctors can tell you what medications to take and what symptoms to expect. They'll tell you the lab results and when to come back for a follow-up. But they don’t tell you how to disclose it to someone you’re dating or how to request flexibility with your boss. They don’t teach you how to navigate all of the social stigmas and deal with unsolicited advice. They don’t tell you how your life, friendships, and even relationships will change. There’s so much they don’t tell you.
That’s where I come in.
This journey has been messy, marked by moments of extreme grief and mental health struggles. It’s been years of imposter syndrome, chasing my tail, and educating my medical teams. And despite an amazing support system, it’s felt really f*cking lonely! I’ve worked hard to find joy in the small moments, humor in the absurdity, and levity in the heaviness. And after twelve long years, I've come to realize that the intricacies of this experience are a story worth sharing.
So —
Welcome to Her Chronic Wellness — where I hope to offer support, hold space, share resources, and build a community for those stumbling their way through their own chronic journeys.
I’m so happy you’re here.
Be well,
Amanda
