Since my last post from my mother’s perspective was one of my most read and most popular posts, I thought I would write another from a different person’s point of view. Tonight’s post comes from the point of view of my husband. I see a lot of people on my TS pages worry about if they are ever going to find someone to be with because they are worried there is no one that can deal with it or who can put up with it. I know I’m young and I do not have as many years into marriage as other people, but, our relationship is real, and it is strong. I used to sometimes think that I would never find someone who can “put up” with me and I don’t just mean my moods, and my very blunt and straight forward type of personality, I mean put up with my Tourette Syndrome. I thought that if I got annoyed with myself, there was no way someone else would be able to deal with it too. There are nights where I just sit and tic over and over again while I’m trying to fall asleep, or when I stop dead in my tracks in the middle of the grocery store and start kicking my feet, or anything else my body makes me do. I thought there was no way someone would want to deal with that. When you date someone with Tourettes Syndrome, you have no choice but to take on everything with them and that is what scared me. However, my husband came along and showed me that it was possible to feel loved not in spite of my Tourettes, but because it makes me who I am.
I told my husband, Scott, that I had Tourette Syndrome the day we met. I am always honest and open about my disorder and I figure that if there is even the slightest chance that I may date and fall for someone, I don’t want my Tourettes to get in the way and have my heart broken even more. When I asked Scott what he thought when I first told him about my TS, he said that he was surprised and didn’t know much about it, “I’m not the kind of person that would act like I know a lot about it either or what it’s like, so it was a learning experience for me from day one.” I remember him sitting and listening to me explain what it was like for me and how bad it could get, and he sat there taking it all in, and was understanding about it from day one. I never got the feeling that it scared him or that he thought it was a deal breaker and because of that, the connection was instant. Telling Scott about my disorder from day one is something that I think brought us a lot closer as a couple. I wanted him to know that I was an honest person and I wasn’t afraid to lay it all out on the table. Scott agreed with me when he said “I think it was a test for both of us that started our relationship off in a great way.” Although I knew that myTourette’s didn’t seem like a problem at first, I would sometimes get worried when they would act up while we were trying to relax. Because in my mind, it’s really easy to say that something isn’t a problem, until the “problem” actually shows itself in full force. I asked Scott if he ever thought those bad nights would ever be a problem in our relationship and he told me “Never. If anything, it probably made it stronger from the start. There hasn’t been a single tic that would get in the way of anything…” Hearing the person you love say things like that is one of the greatest things to hear as a person with TS. Especially, because I knew I was the first person to ever show my husband what Tourette Syndrome really was. I changed his perspective about the disorder as well as his family and I was able to teach him about me and many other people like me. Scott explained ” I definitely didn’t realize what was involved with having it and that there were so many different levels of it.”
Another huge factor that I still sometimes worry about even though I know deep down, he would never let it happen is that it could be an embarrassing situation for the both of us when it happens in public. I kick my feet across the floor when we are walking in grocery stores, or just walking in general and I feel so bad that he has to sit there and wait for me to be able to walk again. I know I should never feel bad about something I cannot control, but it just comes with the territory I guess. But when I ask him if he ever felt embarrassed he just told me “I wouldn’t say it embarrasses me. For a while, I would try to be aware if people were even noticing that anything was happening, I think the main reason I even looked for that is because it would upset me if people were giving you a dirty look or laughing. I know it’s sad, but I expect to hear a rude or ignorant comment someday.” I am also waiting for the day when I hear someone say something ignorant to me. I think it’s important to find someone who can deal with things like my husband does. I think that shows the person suffering from TS that they have someone in their corner. No, they may not understand it completely, or feel what we feel and know exactly what we go through, but to have someone that doesn’t make a huge deal about your tics, someone that comforts you when it happens is huge. Not only does it not embarrass Scott, but he does everything in his power to make it better. “I feel terrible. Seeing someone I love so much have your body do things that you can’t control and to know that there isn’t much I can do about it is just not a good feeling, and a little frustrating that I can’t make it stop.” His love and support has gotten me through a lot of hard days with and without Tourette Syndrome. I know he can’t help either, but, just having him there gives me a little piece of mind.
Because of his strong demeanor and level headedness I asked Scott if it ever scared him, when I had/have really bad days because sometimes it can scare the ones you love when they do not know what to do. There are times where I have no idea what to do either and that can be scary in itself. Scott told me “When you were having panic attacks along with the tics and it was affecting your breathing, yes it scared me. Otherwise it doesn’t really. Knowing that it could pass on to our kids makes me a little nervous, but, everything happens for a reason. If our child does have TS, they will have an amazing role model to look up too and learn from.” My husband and I share the same fears with TS getting passed on to our children, but I know that we will be able to handle it, and the fact that he is able to be honest with me is a big deal. I think putting everything out on the table and really talking about fears and nervousness with my disorder is something that helps our relationship become stronger because of TS, instead of in spite of it.
Having someone come into my life and stay after finding out what some days and nights can be like is huge and it’s something a lot of people with TS think isn’t possible. The right person will come, listen to your story about Tourette Syndrome, watch you tic, cry, and get angry at yourself and everyone around you, but they will stay and do everything they can to try and make it better. I can see the pain in Scott’s eyes when I’m ticcing so much and so bad that I can’t breathe, and I know how much he wishes he could help me and that alone is a comfort. I think it’s important to have someone that knows how hard it can be, and how uncomfortable, but doesn’t think it makes you any different than anyone else. Scott has always told me that he thinks I’m a stronger person because of what I go through and that always makes me feel better and stronger as a person. It takes a special and strong person to get through something that takes control of your body. I’m not saying that to be cocky or anything like that, but because we are all strong. Every single one of us, we have the strength to get back up and face the next day and all the obstacles it may bring even when it takes every ounce of our being to do so.
I want to close this with saying that this wasn’t just a post to brag about my husband (although he’s amazing), but to show people that it is possible to have someone love you and see past the disorder. We all want to find someone that will be there through all the difficult times and as a person with TS, sometimes I have more difficult times than I would like to admit. But, when I thought I wouldn’t find someone who could put up with it, and who wouldn’t get annoyed by it, I did. I truly believe there is someone out there for everyone, and it’s just a matter of finding that person and letting them into your life and your struggles. I think it’s important for both people to be completely honest, and talk about everything. I do not like admitting sometimes when I let my TS get to me, and I try to keep it all in (the emotions), because I hate letting it get me down or “break” me. My husband is someone that makes me talk about things when he knows I need to talk, and he allows me to let all of my emotions out, even if it includes crying because I feel like I can’t take it anymore. I want people to know that it is possible to have a relationship with someone even with TS. We can have the lives of every other person, including relationships and marriages
I just thought I would share this song as well, because it is one that really connected to me with my relationship with my husband and my Tourettes. 🙂