Lisa Marie Basile - Author and Ankylosing Spondylitis Advocate

Jayson:

Lisa, welcome to the show I just gave the intro about you and it's so rich and varied and your background is so immense. But on top of all those interesting and fantastic, great things that you've accomplished, you also have Ankylosing Spondylitis. How did you come across the discovery of Ankylosing Spondylitis? And is it something that ran in your family?

Lisa

Yes, well thank you so much for having me. I really appreciate being here. I was diagnosed in 2017. But I've been having symptoms for about a decade. And it does run in my family. My father has it, my aunt, his sister has it and we think that my grandma, who has passed now, had it. She probably had the worst of all of us, sort of in that, I think it really debilitated her. And then I probably have it worse than my aunt and my father. So it's definitely been a journey and just talking about it and, you know, researching, it's something I'm really passionate about.

Jayson:

Well, of course, it you've got such a varied background in being published across all sorts of different genres. Primarily poetry, that's your what I can take, is your real love. But you also do a lot of writing. And that's how I met you is at ankylosingspondylitis.net. We both kind of work there on and off and you more so than me, you write a lot of articles for that website. What drives you? I mean, you're relatively new to the diagnosis compared to a lot of folks that doesn't make it good or bad. But what drives you so much to be such a giver as you go through your own journey with this?

Lisa:

Great question. You know, I think I love First of all, Health Union, ankylosingspondylitis.net they're such a lovely bunch of people, it feels like family at this point. For me, I think there's always been a part of me that wants to write to create, like a community or a sense of understanding of the self. And I guess for a long time, I sort of felt like, writing was my way of being in the world and that was my contribution. It was how I could help. It was how I could make friends, how I could understand myself and others. So it's just like, kind of my natural language is to write. So when it comes to pain or suffering, whether it's mental or physical, I just, I don't want people for so if I can write anything that just makes someone feel a little bit less alone, or at least as though their their thoughts are valid. I'm glad writing can enable me to do that. Because I think for a long time, reading helped me feel less alone. So I guess I just want to be what I was given, I guess, reading and writing when I was young,

Jayson:

You do such a large amount of writing. And I find all of your articles very interesting. I've actually based several episodes of the podcast on your articles.

Lisa:

Wow!

Jayson:

I think this is really interesting, because I grew up before the internet developed and was diagnosed with ankylosing spondylitis before the internet. And I was just told you have this thing, good luck, and really wasn't told much after that, that's 35 years ago. You wrote an article that I think could help a lot of people and I'm going to have a link to it in the show notes. But I want to get some more feedback from you and it's called Staying Sane, and Managing AS Facebook Group Usage. That's one of the things I see people post stuff online. And sometimes I think you can't really attribute everything that goes wrong in your life to AS sometimes you can, maybe, but I see this constant usage, and how do you try to remove yourself when you're so prolific online, kind of keep saying,

Lisa:

Ah, well, when I was first diagnosed, I, you know, just being diagnosed in 2017. I still knew I had it before then, but I just, I couldn't afford a rheumatologist. So it was a lot of Internet stuff for me, like a lot of group...