Finding Support and Talking About Ankylosing Spondylitis

Hello, and welcome to The Ankylosing Spondylitis Podcast. I can't believe this is the final episode of 2019. So as I wrap up 2019 and look towards 2020, it's just been a fantastic run this year. This is the 30th episode of the show and I wanted to do something a little bit different for this episode. As we look at having Ankylosing Spondylitis and interact on the message boards on Facebook and on the various websites like ankylosingspondylitis.net, I think about the things that I've experienced through the years dealing with Ankylosing Spondylitis, whether it be relationships, the highs and lows of marriages, dealing with family members, work, everything comes into play and I’d really like to take 2020 to be the kind of year of support for Ankylosing Spondylitis. What can I do? What can we all do together to not only better support us, but also find ways to get support from the people around us? So as we roll out of 2019, I came across an article on healthline.com (I'll have the link in the show notes). It's called Finding Support and Talking About Your Ankylosing Spondylitis. That can be very challenging for many of us. As I've said many times, I was diagnosed when I was 14. I didn't meet another person with Ankylosing Spondylitis till I was 26, maybe 27. So it was about 13 years till I meet another person with it, or at least that I was aware of. There was no internet, there was no anything to look up and find information. You went to your rheumatologist twice a year, and what information he gave you is all you really knew about it. There was no way outside of that, that I was aware of at those times to find additional information. So what's available to everybody now is fantastic, but you know, just In the US, spondylitis affects at least 2.7 million people. And I know from the show having been downloaded on 59 different countries, there are lots of people around the world that are dealing with Ankylosing Spondylitis or have loved ones that have Ankylosing Spondylitis. We know that that number is exponentially higher and it doesn't include the people that have it but have not been diagnosed are fighting to get diagnosed. So that number will do nothing but continue to rise. Why? Don't know, hopefully medical research can figure that out as go forward and future generations will either have less amounts of people with it or the best case no people with it.

So how do you get support? You know, it's challenging enough as we all know to pronounce Ankylosing Spondylitis, let alone to explain it to anybody around us, our family members or occasional acquaintances or our job, you know, may seem easier just say to somebody I have arthritis and then just try move on from there. But that really minimizes the condition that you're going through in their mind when you say they being people you tell, if you just say you have arthritis and are very nonchalant about it, they're not going to understand the pain and more importantly, the fatigue that you deal with Ankylosing Spondylitis. So Healthline came up with a series of seven things to help as we go forward with getting support.

Number one, ditch the guilt. It's not unusual for someone with a s to feel that they've let their family or friends down. I can certainly attest to that. Well, it might be normal times to feel that way. You don't have to. I can't tell you the number of times I felt guilty for not being able to do certain things with a spouse or girlfriend or feeling guilty about not being able to keep up with friends as they were go go go or, more importantly, to do the things I wanted to do with my kids as a father That I just couldn't do now, on the flip side, what I did learn is that kids are extremely adaptable. And mine never looked at it as that you couldn't do these things at least, they never said that outright to me. But what they did do is become extremely adaptable to helping me at the times I had them for the summers and...