Grieving For My Old Life

I apologize about my stuffiness in this episode. My allergies were really bad…

Hello and welcome to this episode of the Ankylosing Spondylitis podcast. It's really great to have you all back for another episode. This is going to be an interesting one; it's going to get a little deep, maybe a little heavy. First I want to start it off with an email that I received. This person named Shawn wrote me and said,

"Hey, Jayson, I know it's late at night. I want to let you know I myself have Ankylosing Spondylitis. Diagnosed last year, May of 2018, I found your podcast and a Facebook thread and I've started listening to your show on Spotify. I've downloaded every episode and I'm listening to them all. Now there are so many things I can relate to that you speak about and I really appreciate the awareness you bring to our disease It really helps me to keep focused and not feel alone, (there’s that key thread not feel alone). Just wanted to say thank you for doing what you do. And hopefully we can keep in touch much respect for me a 41 year old male from Canada with AS.”

He and I traded a few more messages afterwards and discussed a little more in depth what he was going through and some of the similarities even though he was just recently diagnosed. Some of the similarities of things that he had encountered that I'd encountered were really interesting. It was great to talk to Shawn.

Anybody that reaches out to me, I hope I've responded back to you. If I haven't, I really apologize and send me another message because, I'm not sure how I missed it and I apologize if I missed any messages from anybody.

So back to the episode I want to start off first with the Question of the Week, when I look at the forums, I see a lot of talk about

“I have AS and my parents, my spouse, my co-workers, they all just say stay positive. If you keep a positive attitude, you can overcome it. If you have positive thoughts, they can help you through some rough times.”

I came across an article that was pretty interesting, written in Healthline by Angie Ebba from June of 2019. The article and there will be a link in the show notes was titled “Stay Positive’ Isn't Good Advice for Chronically I’ll People. Here's Why.” Now, let me preface this with a few things. I tend to try and always say, if anybody asks me how I'm doing, “I'm doing fine, doing great.” You know, those are just the standard go to responses. Everything's good. We all know that with a chronic illness, we all can suffer from depression. It's just normal because you're constantly in pain. And you look around co-workers, friends, spouses who aren't dealing with these items, and it can just really play with your psyche and put you in a depression. As we look at that, if we have a spouse say, “Just stay positive!” or a parent that says “Just stay positive”, You know, you get through this, we know that they don't understand the pain and the issues of what a person with chronic illnesses/ chronic pain deals with. I want to believe that they're not saying that to be mean, or know what to believe that they're saying that to really be helpful to you, really to try and bring your spirits up, but I don't know if that works for all of us.

I know for myself, it took me a long time to come to grips with the pain that I deal with. After my last hip replacement on my left side, (it was the third hip replacement), the doctor had damaged the nerves in my leg, and I now have a drop foot on my left leg and no feeling from the knee down. I went through all the various emotions. I used to like to hike, I was semi active. I liked to walk around, all the things that we take for granted. And now I walk with a cane and for two years, I was on crutches. So I went through all the emotions of grief about I couldn't do...