We see it all around us. On the streets, in movies and in songs, love and romance. They are everyone’s desire at some point. I was diagnosed at 26 in the common age range for an MS diagnosis (20s-40s). These are also the years seen as someone’s prime years- in college, looking for love, perhaps settling in with someone, building a career, getting married and all the typical life-steps.
MS at times has changed how I view myself as a woman. Questions constantly loom such as “am I a burden for my partner?” or “am I still attractive when my symptoms peak?” or “have I embarrassed you in public? “Am I still fun to be around when my fatigue is bad? Sometimes I wish I could be more spontaneous and that I had more energy like I used to before MS. It can be difficult to maintain a romantic relationship when you’re living with MS but with two people who compromise and understand the difficulties that may arise from MS, they can plan around what suits their needs and keep the spark alight.
The thing is, I am not my disease, I am not MS. While those questions might go through my mind, I know that when my partner looks at me, she still sees the person that she fell in love with and not the condition. Although we might not go out for date nights as much as we used to, we still make a joint effort in bringing a date night to us. This includes nights in with a movie and takeaway - Netflix and chilling out. We tend to do things earlier so that I have more energy. Compromise is key for myself and my partner when it comes to MS and romance.
I see myself as lucky because I had found “the one” before my diagnosis so I didn’t have to worry about how to tell someone I’m dating about my condition. My partner has been with me every step of the way.
I think it’s fair to be said most men don’t live up to the Hollywood romance and the way it’s sometimes portrayed but god do we try our best! By the time of my diagnosis at the age of 34, I had met my beautiful wife and we were 4 years married. We now have a beautiful son and another on the way. Like Christina, I never had to go through the process of having to tell someone about my condition. I thank god every day for that because without my wife going through this process with me, I don’t think I would be as strong as I am now.
One of the definitions I found for Romance was:
“feeling of mystery, excitement, and remoteness from everyday life”
Quite apt for both MS and romance with a loved one. The illness fills your head full of mystery about the future and sometimes pulls you back and isolates you into a remote-ness from your everyday life. MS gives you a kick in the nuts, excuse the pun, from an in-timacy perspective. I’ve found myself questioning myself on countless occasions “Jesus you’re useless…”, “how embarrassing…” and as time progresses this can eat at you and sometimes it’s easier not to try.
Thankfully I get a kick up the ass and get pulled out of whatever dark room I may have entered. All because the person who, 13 years ago filled my head full of mystery of what could be, of excitement of what was to come, took me to a remote place that was only her and I.
To me romance is not necessarily about the big gestures; it may have been that a few years ago. Sometimes the smallest of things can be the most romantic. The spontaneous back and foot rub, the dinner made or simply the holding of hands. These all may seem the easiest for most. However when you have little feeling in your dominant hand these tasks become even more challenging but more enjoyable and appreciated when they are done. Christina is right, Netflix and chilling on our own sofa is a bloody good date night too!
My perspective on life with MS is about team work. Like Christina, we are not MS, it doesn’t define us. We have the full understanding that the love that we first found all those years ago is not going to be broken by MS, we are only going to get stronger. Ro-mance is not dead, it has just taken on a different form and that’s ok because it will never disappear.