Paige O’Neil

Paige O'Neil

Paige O’Neil’s Lyme Hack:

“Hi, my name is Paige O’Neil and I’ve been battling chronic Lyme disease since 2018. I’d like to share with you two tips that have really changed my battle with this disease. And yes, I have my notes on my computer because, as you know, brain fog and memory loss do not make it very easy to give a speech. So, I wish I could offer easy tips like {oh, just drink lemon water,” or “sleep with supportive pills,” both of which are actually pretty helpful. But I actually want to talk about the mental and emotional toll of being chronically ill. In any crisis, physical, mental, or whatever the slow killer will be loneliness. And you don’t even have to be in a crisis to see that. Like, we see billionaires talking about feeling unfulfilled and feeling lonely, despite all the health and wealth they have available to them. Feeling lonely, for me is what sank me deeper and deeper into a dark hole when I started getting sick. People would try like being sympathetic to say things like, “wow, I can’t imagine what you’re going through,” or “I could never do it, what you’re going through.” And despite their intentions, it only worsened my isolated feeling, as I’m sure you also have experienced. So here are my two tips for my fellow spoonies. One, put the effort into finding your spoonie community online and two, journal. So one, connecting with spoonies online has been so important for me, this spoony t-shirt is actually from my friend Rachel. And on any bad flare day, I can just text one of them, talk to them, and they know exactly what I’m going through. And that is something so rare. So community is how you combat this loneliness. Okay, two journaling. Why journaling? I know, we all struggle with internalized ableism, or internalized gaslighting from what we may receive from doctors or families or friends. And for me, there are days that I wonder, even if I’m really that sick, or I’m stuck believing that I’ve made no progress towards health, that I’m stuck in a timeless, stagnant state of being. And this is why it’s important for you to keep a record of your journey. Don’t put too much pressure on yourself. For me, there are days when I can’t hold a pen or I can’t get to the end of the sentence because of the brain fog, I totally get that. But it’s worth it to journal when you can because then this is proof that you’re battling every single day. That you do have some better days. That the people around you do care and that you have survived your worst days. I hope these two tips have been helpful. I’m very open about my journey with chronic illness. So if you have any questions, just shoot me a text and if you need someone to connect with, I’m right here. Thank you.”