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 stuff as a divorced parent, they became very good at knowing what I couldn't, couldn't do and, and we just, we made it work. So it was always amazing to me how adaptable your kids are, if you give them the opportunity to be adaptable, to let you know, let them in on what you're dealing with. So just remember, if you allow guilt to fester, it can lead to depression. And that's one thing that we don't want to deal with on top of Ankylosing Spondylitis as depression. 

Number two, educate, educate, educate, you know, it can't be stressed enough. Education is the key to making sure that others understand Ankylosing Spondylitis. Educate your spouse, have them go to doctors appointments with you have them come in when you go to see the doctor so they understand what the doctor is telling you, educate your co workers, educate your boss, you can be very proactive about it, I made sure that my boss knew and he was more accommodating when I worked because both of his young children have dealt with juvenile rheumatoid arthritis. So he was fairly familiar with what I might be dealing with, and was therefore more accommodating to let me do certain things, whether it be maybe work from home an extra day, or work a few hours this day, but leave early for a doctor appointment. We had a really good working relationship that way and for that, I'm always going to be a very appreciative of what he did. But give your co workers give your boss a chance to understand what you're doing and dealing with, especially in certain jobs where I see people that have jobs where there's their life and other people's lives can be affected by the quality of their work. So you have to be in tip top shape maybe for whatever your job is. So it's best that you left your job though there may be accommodations, but it just continues to educate that having Ankylosing Spondylitis doesn't mean we're any less of a person. It's an invisible illness. So a lot of people aren't going to believe what we're dealing with. So that's where you have to educate, educate, educate. Remember that, to combat this, educate the people in your life about as and how it impacts your day to day. You know, you can print some online educational materials for families and friends. Give them this podcast, let them listen to somebody besides you talk about their dealings with Ankylosing Spondylitis, which may open them up to them listening to you when you talk about this condition that nobody can see.

Number three, join a support group. That's been the big one for me. And that was my takeaway for 2019 is I wanted to join a support group here in Michigan where I live The support group was about three hours away to the early part of the year I skipped out said no, I don't want to drive. I finally took time, drove over, and met with everybody at a meeting and it was great to connect with everybody. So go to a website like Spondylitis Association of America and see if they have a local support group to your area (this is for the United States). For people in England, Australia, Canada, many of the other countries, you guys also have Spondylitis Associations. I'll have links to them in the show notes, where you can find communities local to where you're at and if there's not a community support group near where you're at, consider starting one. You’re probably not the only person in that area with Ankylosing Spondylitis. So maybe you contact the spondylitis Association of America and put together your own support group for that area could start off small with 1,2,3 people could grow exponentially over time, but the more interactions you get, the better, plus it's also therapeutic. That you're sitting there talking with other people that have Ankylosing Spondylitis. When I went, I saw people that had some of the similar conditions and experiences I had up to folks that just had a sore back or had been dealing with, you know, some mild fusing for the years. So there's the whole gamut. But we all share that same item. And it was it was really kind of fun. Number four, communicate your needs, you know, your spouse, your kids your job, they can't work on what they don't know, if you don't let them know what you're dealing with, and try to hold it all in. You're not going to have us, for example, a spouse I didn't let my first spouse in. She knew I was hurting, but every time she tried to help I pushed her away. It wasn't fair to her, wasn't fair to our marriage, and wasn't fair to me and caused many, many issues. And you know, I don't know if that was part of the divorce, I'm sure it was but anyway, communicate what you need. Many people want to help, but they might not know how I know that when I help somebody I see maybe as simple as holding a door for somebody, they see me walking up with a cane and I open the door and hold it for them. I sometimes get people amazed that I'm doing that and it feels good to help people and people will want to help you and get that same, feel good rush out of it. So if somebody wants to help you put groceries in your car, let them if you're having a bad day, whatever simple or as complex as it might be, communicate your needs. Let people know when you might need some help people when they might need some help. And just it allows you to be a better person. 

Number five, stay positive but don't hide your pain. This is a hard one. This is a real hard one for me, is I tried very much to mask what was going on with me until my final few years at work. When I broke down and had a scooter I had been on crutches for a couple years. But even when I was on crutches, we had a building it was good, I think half mile long. And I would go back and forth on that building on crutches as best I could, so that nobody would ever think that I couldn't do something I tried to hide or minimize my condition as much as possible. And that doesn't mean you're out looking for special favors or anything. You're just looking for accommodations to make your job easier to make your life easier to make sure that you can be the best person you can be. But stay positive, that positive mindset is going to help you be more open. In my opinion, there's some research out that talks about chronic illnesses and I think it uses Parkinson's, which isn't exactly what we have, but it's still a chronic condition and the ability to stay positive can help in that so do as best you can. It helps to keep you out of depressive states. If you're finding that you're having a hard time being positive. If you're finding that you're having a hard time dealing with this and feeling that you're slipping into a depressive mood. Please see a doctor  or see a therapist It might be something that's as simple as talking to somebody besides a spouse or a co worker and can help you out doing talk therapy, it might be something where you actually need some medication, shorter, long term to help out with a condition. There's nothing wrong with reaching out to folks to say that you need help. 

Number six, involve others in your treatment. You know, many times, you'll know that if you ever seen a loved one that's dealing with a condition and there's nothing you can do it feel helpless. You want to do what you can do to help them even though you don't know how well that's how others feel when they see you. So if you have a spouse, a mother, a father, any brother, sister, and they want to go to a doctor's appointment with you to better understand what Ankylosing Spondylitis says, let them go. Bring them into the fold, so to speak, let them know what you're dealing with. Let them know the medications you take the pluses and the minuses that can happen, the things that they might see from the middle You taking the medications, good and bad that way, your loved one your family member, they're all better able to help you cope with this condition called Ankylosing Spondylitis. So, you know, in addition to going to doctor's appointments, maybe some of your family wants to come over and take a class with you. Maybe some want to come over and help you on occasion, like cook a week's worth of meals to make it simpler on yourself and your family. Have your family help with cooking meals for a week. There are all sorts of things that you can do to get others involved that helps to your benefit. 

Number seven, get support at work. This is one that took me a while to take up. When you're at your work, discuss with your supervisor, direct supervisor, whoever HR, what type of maybe accommodations you might need, or that might be able to make your job easier for you. Maybe they can put you on a new job that makes So that you can work longer. That was what ultimately happened to me, my job moved me to a position that allowed me to probably work another eight, nine years longer than I thought I would before I finally took a medical retirement of 47. I didn't want to take one. I just couldn't do it anymore. You know, it's an honest conversation you have to have, it's a hard conversation. And sometimes if you're used to holding everything in, you have to be brutally honest and peel back and say, Look, I'm not feeling well, you can't see this illness, but here's what it's doing. Here's what I'm experiencing. Here's the fatigue that it causes. You know, if I forget something or whatever it might be, it's not that I'm being sloppy. I just might be extra tired. Let them know, get everyone involved. I think you might find that you find better working relationships once people are able to understand why you're acting certain ways that you are. Let everybody know that it impacts your life in various ways. I assure them of your ability to do your job. And be like said be very clear about accommodations you may need if you want and it's a small enough company or it's a family run company. You may even consider contacting somebody like a spondylitis association and getting brochures that you can put in a break room about Ankylosing Spondylitis or even talking to the folks on a break period about what it is that you deal with, and open it up and say, Hey, you might have had questions when you see me do this or this. Now's the time to ask them, I'm here to answer questions. And I'd love to talk about Ankylosing Spondylitis. Maybe you don't want to do that. It's entirely up to you, but you know, get support at work that'll help you to stay working longer. 

So with that all said, we wrap up 2019 and I look forward to going into 2020. Remember, you don't have to go it alone. Even if you don't have close family members, you're not alone on this as journey. Go to any of the Facebook Ankylosing Spondylitis groups. Reach out to them, go to ankylosingspondylitis.net and there's a community section there. All of those websites can provide you with some measure of support as you go through this Ankylosing Spondylitis journey. You know, everyone has to deal with it his or her own way. Everyone has his or her own cross to bear as you deal with the Ankylosing Spondylitis pain, but you don't have to deal with it alone. There are many people out there that are willing to help and or at least listen and allow you to vent. So with that said, I hope everybody has a wonderful New Year and a great start to 2020 and I look forward to interacting and growing with you all in the New Year. Thanks for a great 2019, Bye

https://www.healthline.com/health/ankylosing-spondylitis/living-better/finding-support#1