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 what I wanted to do, and everybody would just say stay positive.
I really tried hard not to be snarky attack backlash out at anybody. I wasn't always successful. There's many times I had to apologize for what I had said or done in my actions that were 99% of the time driven by pain. Let's face it, we're all in pain and it affects our emotions. So I also know that it affected my work. There was many, many things that I know I was passed over for because of my “attitude”. It wasn't that I was unwilling to do things. It was just generally that I was in pain. My doctor had tried to talk me into going on disability years ago and I fought him and held off and held off. And it really was a detriment to myself, I should have gone out earlier.
I see people online posting, “My mom asked me how I'm doing, I tell her I'm in pain and she says, just be happier your alive or put on a happy face”, or whatever the heck they say. In this this article, the author talks about how that really invalidates the feelings that we as chronic pain sufferers have, or may invalidate your feelings. She wrote (this is what touched me),
“When I'm on day three of a flare up, when I can't do anything but cry and rock because the meds can't touch the pain. When the noise of the clock in the next room feels excruciating and the cats fur against my skin hurts - I find myself at a loss.”
That was very familiar to me and when you're in those levels of pain, no amount of positive thinking, no anything is going to help with that until that flare subside.
You know, I wish that more people that don't have as would listen to the show, to kind of understand what goes on with our bodies. I would encourage you, if you're listening to this and you have Ankylosing Spondylitis, share these episodes. Share all these episodes with anybody, your parents, your spouse, significant other whoever so that they can understand or maybe better understands what you're going through. So as we look at that and try to stay positive, you know, if somebody in the AS community (Ankylosing Spondylitis community) came up to me and said, “You know, keep your chin up, keep going, keep fighting”, that doesn't really tend to bother me, because I know they're going through what I'm going through, and I appreciate that that's actually maybe them checking in on me and making sure I'm okay.
Sometimes though, when it's somebody that doesn't have Ankylosing Spondylitis, and they're all kind of peppy, they say, “Well if you think more positive, everything will be more positive”. That's sometimes where you want to really just go off on them and I found I've had to really watch my tongue and pull back and not lash out at people.
So overall with this Question the Week, just keeping a positive attitude really is not always what we need. We need to be allowed as somebody with Ankylosing Spondylitis, as somebody that's in chronic pain, we need to be allowed to be ourselves to be authentic to present to the world that there's some days weren't pain, there's other days we're in less pain, we can only do what we can do we need to be understood. Not coddled, not baby not looked down upon. Just understood! That's all that I ask for with people in my life, is that they just understand that there's days when they may come over to my house and it's not the cleanest, you know, because I don't feel good and cleaning takes a lot of energy, a lot of time and it's just me.
Overall, yes we can have positive energy on the good days, on the bad days, we just need to realize that we have got to fight through them. We're all here together, no need to bicker with anybody online. That's a waste of energy. Just do the best you can do.
Please don't hesitate to reach out to anybody that's, you know, in your support network, even reach out to myself if you just need to bounce a message off of somebody or to vent. We're all in this together. And we're all trying to help each other through this journey of Ankylosing Spondylitis.
For this main part of the show, I wanted to talk about something that I see quite often, and I don't know if there's a proper way to discuss it, but it's really about grieving for what we were before AS, before Ankylosing Spondylitis, if we can remember that? What a chronic illness like Ankylosing Spondylitis does.
After my last hip replacement, I was very angry and in denial. As I've indicated before, I've been dealing with Ankylosing Spondylitis for a long time. When we have the loss of who we were, we start to grieve for that, and we can become angry.
My losses came over a number of years due to the age that I was when diagnosed. I was 14 and really my only dream when I was a kid had been to join the military. That's all I wanted to do. I didn’t think about college, I didn't think about anything. I wanted to join the military and see the world. By the time I was 18, my Ankylosing Spondylitis was so bad, I was not eligible to join the military. I could barely walk straight half the time so I went to college, drifted around a little bit and found a job I thought I liked and finished out my career doing it, but it wasn't what I wanted to do. So it was just what I ended up doing.
Then in my 30s when I started to become a father my Ankylosing Spondylitis was bad at that point, and I was not getting any treatment for it. This was before biologics existed and I really was just taking ibuprofen and this led to a miserable marriage for me, for my ex wife, and most importantly, for my kids, it was just not a good situation all the way around and to this day, it affects the relationship with my kids, and it took its toll on all of us.
By the time I got to my 40s, I was starting to seek treatment from a Rheumatologist. Again, looking to see what ways to mitigate the pain and get this AS under control if possible or at least slow it down some. Also in my early 40s, I had two more hip replacements on my left side. And that was the point that I lost the use of my lower left leg. My ability to walk without the use of aid, you know, like a cane was gone. My ability to just move and do what I wanted to do was gone. I had to deliberately think about each step so that I didn't fall with each step. These, and many smaller episodes, were all losses. You know, I had to come to grips with each of those losses and their old way it's been for decades of my body slowly quitting on me with each of these losses. You know, to me representing that each time that my chronic illness Ankylosing Spondylitis told me it was the boss and there was no cure. It was no getting better and I had to come to grips with how to become the boss of it again, my old self was gone.
I know I had to come to grips with the new man that I was. I also had to come to grips with what I was and was not capable of doing as a man. All of those played with my psyche and worked against me many times. It would destroy not only the physical person that I was, but it also destroyed my mental state many times and each time I would have to reevaluate what I now felt my worth was to my kids to my job, to potential women in my life, and finally to myself. It wasn't till much later on that I realized that this was not the proper order to capture those in to become a healthy person again.
As we deal with loss, there are five stages of loss. We all go through these and we deal with them in different ways, because Ankylosing Spondylitis takes things from us. It takes who we were. It robs us of them. And so with loss, there are five stages:
It took me a long time to move through stages one and two, I didn't go through them easily. They lasted the longest for me, I fought the most in those stages which created lots of difficult situations in relationships and work. I know it affected a lot of my stuff at work, and cost me the ability to move up and move around at my place of employment, it's just what it was.
It finally took lots of counseling for me to realize that I had to accept and move through each one of those steps. That I had to do it in a less destructive way than I had been doing it and to come to grips with things. For you out there, you may be in step one, step two, step three, step four, step five, everybody's different as we fight each of these battles with Ankylosing Spondylitis, and we’re going to move through each one of them differently.
As the author of this article mentions, she sat there looking at her closet full of shoes and purses and stuff. And in her mind, she could see each spot she had worn some of these items and what they had meant to her and how she was no longer was going to be able to wear these due to her chronic illness.
I'm sure all of us go through those thoughts in different form or fashion and it really can affect who we are and what we are, if we let it. I think if we can get through those five stages in a healthy way, and get to the acceptance, that's where we get back control of Ankylosing Spondylitis and we're in charge. I can't tell you how to go through those stages. I can't tell you what's the right amount of time to spend in each stage; we're all different.
What we can do though is support each other. If you are having a rough day, say you're having a rough day. Build a support system, contact them, have them check it on you, check in on them. It goes both ways as we all deal with these things that AS throws at us. We don't know when we're going to lose something, to lose some ability that we always just did, whether it be to just go out and mow the grass and now I can't walk and do that. I used to love to do this or that. We don't know when we may lose those abilities, but once we do, it can really affect our mindset.
So I really hope everybody will try to build as best a support system as they can. One, which will be there for others with Ankylosing Spondylitis. If people are being there for you, I hope you're there for them when they need it.
In closing, I know I want to keep these episodes kind of short so that you can listen to it easily. Remember that as you go through, whether you're wearing work boots or high heels, if you're a woman, replace those with comfortable shoes, a cane, a walker, whatever it takes to make you the new person that you are to be happy and healthy and excel at what you can do whatever that may be.
If you're a mother excel at being the best mother, you can know that you have limitations. Show your kids that you have those limitations, and they'll grow up understanding, working with you on those limitations and helping you. If you're a father, be the best father you can. Take it from me, they(kids) grow up so fast and there's only a certain amount of time that you get to spend with them when they're little. As a father, try not to lose any of that because it's just something you can never get back.
I hope everybody has a great day. I really appreciate everything that you y’all do. So again, thank you and have a great day.
‘Stay Positive’ Isn’t Good Advice for Chronically Ill People. Here’s Why – Healthline.
Grieving for My Old Life After a Chronic Illness Diagnosis - Healthline