Hello, and welcome to this episode of The Ankylosing Spondylitis Podcast. I'm really glad that we can connect and discuss these topics on Ankylosing Spondylitis. So first I wanted to read a new review I got from Susan in Tampa, in the United States. She left a review on iTunes for the show and she said,
“I was very glad to hear Jayson talk about dating. My experience has been upsetting in that many men are unwilling to date or go further after the initial meeting, mostly due to the cane and the disabled appearance. I just want to stay in my house and not put myself out there. Well, thanks for all the great information, Jayson.”
Well, Susan, you're welcome. I can certainly understand. As I've said many times I walk with a cane I'm hunched over from fusing and my back and neck. And so you know, I don't give off this great appearance of virility at all. I come walking up and I've had some women leave right as soon as I've walked up from the date without even saying more than Hello, once they see how I walk, so I can certainly understand it's not a good feeling. It makes you you know, we already as folks with Ankylosing Spondylitis can be dealing with feelings of rejection. So then when it happens from a complete stranger who you may have had some conversation via text maybe over the phone, thinking, Hey, I kind of get along and then to have that happen. You know, I certainly understand or there are the first dates but there's never the second dates. So Susan, I completely get it. Thank you so much for the review. If you're listening to this episode, contact me through the website spondypodcast.com on the Contact link. I've got an Ankylosing Spondylitis Podcast decal that I'll shoot out to you. So anyway, I really appreciate that review.
Today's Question of the Week is actually going to tie into the entire episode. As I was reading through the forums on Facebook, one of the messages came out and it struck me as very relatable and it was from a young lady who was in a relationship and anytime she had something wrong related to Ankylosing Spondylitis, the other party not necessarily one upping her but saying, well, yeah I have this, you have that I have this you have that I have this. And well, neither party was wrong in expressing how they were dealing with their different ailments, the real issue boils down to one party, the person with Ankylosing Spondylitis wasn't getting the support that they needed. And that really is the crux of a situation I think a lot of us deal with this in relationships, whether they be intimate relationships, parental relationships, or work relationships. There are certain things we need for support from all the parties, different ways, but there's also certain ways we need to handle ourselves. So I wanted to kind of jump into that and this could be a little bit of a longer episode than normal. So I thought I would just kind of combine the two as we all know, having any type of chronic condition like Ankylosing Spondylitis or any other number of conditions can take a toll on not only our physical well being, but also our psychological well being. And I think the physical well being we can recover from and push forward through. Its that psychological well being that can be very, very difficult to correct, move forward, and overcome. And that's what we'll talk about to a degree today. So for anybody that's listening, that might be a caregiver or new to what Ankylosing Spondylitis is, in its simplest form, it's a type of arthritis that creates inflammation in the body. Generally thought of as affecting primarily the spine of people, the vertebrae, it really will connect and attack anywhere that there is the connective tissues and bone. Mine started off really, really heavy in the hips, move to the spine and other areas, but we're all Different it's going to affect us all different. So you know, over time, this long term inflammation can create new pieces of bone that form of the spine, which causes you know, stooping, hunched over bamboo spine, it's called impair your mobility. For me it has restricted how far I can walk, how I walk, and I know that if I'm going to walk long distances, I need to take my scooter with me or make arrangements to have a scooter on site that I rent or whatever, when one person in relationship has Ankylosing Spondylitis. You know, it's really a challenge for both people to have to deal with both parties have to really work hard at sustaining both physical and emotional closeness.
“As the condition progresses, illness can become all encompassing and overwhelming and structure and support are essential to navigate the demands.” Kristina Brown, doctorate chair and Associate Professor in the couple and Family Therapy Department at Adler University in Chicago.
Here are five common relationship issues you may face when you have Ankylosing Spondylitis and hopefully some tips to help maintain a healthy partnership.
Number one, You feel like you can't talk about the condition. I can certainly relate to this. A lack of communication can hinder any relationship. We all know that, I've been married and divorced a couple times. So I've been there done that so to speak, but “it can become especially detrimental when someone is dealing with a condition like Ankylosing Spondylitis. You know, it doesn't matter how long we've been together as a couple. We still need to ask directly for what we need”, Brown says in the context of Ankylosing Spondylitis, this can be being clear about whether you want your partner to attend a doctor's appointment with you, for example, and I know this partners are not mind reader's, when you're dealing with your partner. Don't expect them to know what you're dealing with emotionally, physically and pain wise. I would always say with my last wife, I was very direct about what I needed from her. It was helpful, accomplishing something, I was very direct and saying, hey, I need you to help me with this, if you don't mind, I just physically can't do it can't do it alone might be that I also had to let her know, look, I don't need help with this. I know you're trying to help me in this particular instance and while I appreciate it, and I'm grateful for you trying to help me with it, please just let me do it. So you have to address that with your partner, whatever is the best, most appropriate way for your communication level with the partner? If you're not at that point, if you have not let your partner know what you need, please do Don't get mad, build resentment up because you think that they know you need help with this, whatever this is. You have to be very direct, very blunt, yet not rude, not mean, not any way but here's what I need to be able to function properly. Here's what I need to get whatever. So make sure that you're just very direct. Don't try to think that they're going to guess what you need and don't avoid the topic. Even if it becomes, you don't want to become a burden can create feelings of distance and a lack of closeness. Don't sit there and say, Oh my goodness, I'm going to be a burden on this person for the rest of their life. And they're, they're never going to be able to handle this. Don't sell them short. You don't know what they can handle; you don't know what they're capable of stepping up and doing. So that all goes back to communication. Let them know what you need, what you are capable of, and watch what they're capable of doing. Some are going to rise up to the occasion. Others are not, it's better, you know that while you're still functioning, and then you both could go your separate ways if that's what needs to be done. Again, find a happy medium, you don't want to just always talk about you know, your back pain or your lack of mobility or what you can't do, you know, make sure that you also talk with them about what you can do what you like to do what you think is still doable in your new condition as You learn about Ankylosing Spondylitis
Number two, Your partner's not sure how to help. This is kind of what I talked about to number one as well, but it should expand on it, your partner won't always know what you need. They're not a mind reader and this means that it's up to you, the person with Ankylosing Spondylitis to be very clear about what you need help with when you need help. And when you want to be or can be independent. This way your partner is going to know what you need help with what you generally like help with and what you generally can do on your own. But again, all that can also change at any given time. So you might say, Hey, I have no problem with my Ankylosing Spondylitis doing the dishes, I'll do those will you make dinner, whatever the whatever the arrangement is, but then there's going to be that time that your back is killing you and maybe you can't do dishes and you go and ask your partner Do you mind cooking but do you mind you know, cleaning up after the meal and it's just that conversation that you have Dad with some of my back is hurting today I I my hips already today, whatever and be very comfortable and open about approaching and discussing your limitations at that given time. I think that's it, at least from my perspective as a man much harder for the man to do. It's much harder for me to admit that there are things that I can and can't do. And I had that issue with my ex wives all the time, which it was very hard for me to sit there and say, I can't do this. I, I can't, whatever I can't is. So that created some resentment, some issues in the relationship. And we know that communicating responsibilities, like the physical tasks that you can no longer perform due to impaired mobility, if you tell them that can help to minimize any tension or resentment in the relationship. And it will also hopefully, if you're very forward and very communicative about what you can and can't do, you and you do the things that you generally say you could do, it will make your loved one fell more like your romantic partner, your partner in life and not just a caregiver for you.
Number three, Impaired mobility may limit activities you once enjoyed together. This one is very, very close to me because of the issues I dealt with walking on a cane and having a drop foot so I wear a brace. I have a scooter which makes my mobility issues somewhat mitigated but it's also a different it's not the same as being able to walk together when one of us riding a scooter. So anyway, Ankylosing Spondylitis as we know can make it difficult for getting out and doing and enjoying activities that you might have done as a couple one time whether it be hiking or go into a shopping center together or the grocery store together or just anything that involves, you know, walking any long distances, being the person with Ankylosing Spondylitis, you know that you don't want to really get out there and aggravate your hips hurt yourself. You know that that two hours of movement could cause 2,3,4 days where there is pain, so as a creature of habit, we want to try to avoid pain as much as possible. And that means that we can sometimes limit our interactions with others, we can reduce our social lives. We all know that we've all been where we get up in the morning, we feel fairly good. Have every intention of meeting friends after work, or later in the afternoon to do something. And 5,6,7 hours later, you're emotionally and physically exhausted. And the idea of then going out and trying to put on a happy face to act like you're having a good time when inside you're dealing with a ton of pain just doesn't strike many of us as being a fun event then. So it's done in common, pick up the phone, call, text, whatever and say, I'm real sorry, I can't make it your friends if you haven't had that explanation or that discussion with about what Ankylosing Spondylitis is, they may have hurt feelings, because they've been waiting all day for you to go out. They don't understand and some resentment can build up there where maybe they don't invite you out the next time. And it's just becomes this cycle of isolation. And we tell our partners go ahead, you go and do it, I'm not feeling well go out, have fun. And that puts our partners in a position possibly where they start to feel guilty going, I'm going out, I'm doing these activities, I no longer have my partner with me and it puts some guilt on them. Maybe there's times I know that even though I felt horrible, I've had to kind of, in my mind, say, I gotta suck it up and go out and enjoy this evening as best I can have as good a time as I can. And just deal with the pain that comes along, if it comes along afterwards. So I just have to deal with it. So you kind of got to, or at least, I would hope you try to make some effort to not completely isolate yourself because maintaining those social connections is important, I think psychologically, which I talked about earlier, that once that barrier comes down, and we start to isolate ourselves. That's what the real damage is from and can start to take place in our mind. So, you know, make sure explain to your friends and family, what your limitations are, make sure that they understand that there's some get togethers you can attend, there's some you can't. And if your family and friends are not supportive of it or or think that you're making it up, maybe it's time to find some new friends. You really can't find new family, but you can limit your exposure to them and maybe your partner's family, you you spend more time with them if they're more supportive, and just find ways that are beneficial for you to have a good time within the capabilities that you have to act on this new, you know, new norm, this new way of looking at what as allows your body to do and not do because we all can think this is what I used to like to do, but I may not be able to do it anymore. Good example. I love to hike, used to love to hike, go anywhere walk, Ienjoyed it. All I wanted to do was hike, even though I had been affected by AS in my hips when I was young and had hips replaced, I still liked to go hiking. So maybe, oh, six years ago or so, my ex-wife and I, we were in Arizona, and we stopped at this trail we wanted to we're going to just walk as far and she was great. She really very rarely gave me much flack about my condition. And so we decided there was a Bell Rock in Sedona, Arizona. Nice easy trail. We could walk easy How was that? my cane said let's go as far as we can go. So we walked maybe 100 yards. Do you want to go back? Now? Let's keep going. We kept going. We got 2,3,4 hundred yards. We kept going. She kept looking at me. She goes Are you okay? You're going to be okay because we got to every step you take this way is one footstep you got to take back to get to the car. So Nope, I'm good. I feel great. Love the Arizona weather. It's dry. It's cool out. Let's go. I'll tell you I don't know what I want. I can't go any further. say okay, so we got all the way to the end of the group trails. It started to be rocky rough. I think we should go back. Nope, not go back. Let's keep going. We ended up walking four miles round trip that day, two miles up. Matter of fact, we got so high up on the side of Bell Rock, that people would see me coming at them with a cane and look and go, how did you get up here? I climbed, there was many spots where I'd put the cane up on the top of the rock and just go as best I could. And that was before I was wearing a brace. I was really dealing with the drop foot and having the issues of having to pick my foot up and have a weird gait. So I did it that day. I felt great. I paid for it a couple days afterwards. But it was so worth it to me to be able to enjoy it to get up there at the elevation we got up to and just get back to what I enjoyed that I didn't care about what the ramifications were going to be in the future. So there are times when you're going to feel like that. Let your partner know and just let them know we're going to do as much as we can. Same thing I did when I walked a lot around New Orleans. We took the trial into the French Quarter. And we walked basically a big circle around the French Quarter from the trolley, all the way down to Cafe Du Monde over up another street through Jackson Square, just a great time. And we walked a long ways that day. I was exhausted by the time we got back to the hotel room, but it was so worth it because I got to experience the French Quarter of the way I wanted to not on a scooter, but actually just walking it today. I don't think I could do that today. I'd want the scooter but at least I can say I did it. And for me that psychological victory is what really matters. And my spouse at the time she was fantastic with being very accommodating and understanding that we need to stop, we need to break, I need to sit down. So again, that was really a great trip for me.
Number four, You may need to redefine intimacy. One of the things I would first suggest you do when you're looking at intimacy is if you have not read The 5 love languages. That would be the first step I would send you out to do. I know that that is been around for a long time and you may or may not agree with it. But I think once you define what it is that each person finds important in a relationship, then you can then work to build your new intimate life around that. And so I'll have a link to the five love languages in the show notes. It's an easy book to buy, whether it be audible or on amazon.com. So I'll have a link to it through there. And I would encourage you to read it if you have not checked it out from the library, whatever. But I think it's a very valuable book as you look at redefining intimacy once you know what each person finds important that can help you to build upon that and come up with what a new normal might be. In regards to intimate situations Dr. Brown says, “First, we have to expand the definition of physical intimacy and then look for creative ways to add to a couples definition. Touch and closeness are important parts of maintaining physical intimacy. This can start with, whether it be kissing a caress of the face, a hand on the back or the knee. Or for some people just being in the same room, you might be doing different things, but you're just in the same room that can all start to build upon that intimate time you'll share later on.” You also have to know that and understand and have that conversation with your partner that having sex may not be as easy as it used to be, particularly because, you know, certain movements can aggravate Ankylosing Spondylitis, but it is possible to stay close and then keep up a healthy and intimate physical relationship despite any limitations. And here's what I'm going to suggest that you go back and listen...