Here’s the problem with living with MS and dating Superman. When he gets home from circling the earth 259 times and you say, “I’m not feeling very well today, I slept until 2 pm and I’m still too tired to make lunch,” he will look at you like you are speaking Swahili. Me and Superman, we may live in the same town, but we are from two very different worlds.
It’s not really his fault. Superman’s a good guy. But his experience of illness and disability consists of menacing villains who trap him in a room with Kryptonite every now and then. In other words, only in the most dramatic and unusual of circumstances will he experience compromised physical or cognitive function. Like, for example, losing some fingers to a table saw .
The Superman I’ve been hanging out with – who I’ll call Justin, for the purposes of this post – is not unlike the actual superhero in that he does not comprehend regular, everyday, humans-who-get-sick sorta stuff, much less life-with-MS stuff. Like why I absolutely cannot fall asleep under any circumstances without doing my yoga stretches, because otherwise electrical sensations running down my body will keep me awake all night and twitching like a dying bug.
Or why – and this is really more of a typical human thing rather than an MS thing – I need to eat food at lunchtime and dinnertime. Superman (the one I know) eats a bowl of Fruit Loops in the morning, washes it down with some fruit punch, and is good till around 10 pm. Do I think this is healthy? No, of course not. But his body lets him get away with it (at least for now), so for him, it’s normal, and my questions about what we’ll be eating for lunch and dinner are not.
This has all been a very interesting experience for me. I like to think that I do not identify with MS – that I do not make it part of my identity, that I am simply Karen, not Karen With MS. But hanging out with Superman has forced me to look at how much I desire – even require – that the people in my life acknowledge that “I’m the one with MS” and therefore, I deserve special treatment in some ways.
You’d think that since I write a blog about being an empowered woman living with MS that I wouldn’t have this issue. But victim patterns are sneaky and hard to spot. They can be very subtle. And sometimes they take very specific life circumstances for us to become aware of them. Like this one.
I am attracted to Justin because he’s Superman-esque. But I also feel sorta uncomfortable – almost unsafe – around him because his experience is so different from mine that he can’t relate to my everyday struggles. And I’m on an upswing these days! I’m not even in the midst of a flare-up! How will he respond when I’m full-on sick?
My ex-boyfriend couldn’t really relate to my everyday struggles either, but he and I had an unspoken agreement that worked for us: His job was to stop and express compassion for me when I cued him and my job was to revel in what a cranky jerk he was when he got a cold or stomach flu, because it made me feel better about how gracefully I typically deal with my illness.
I realize now, though, in relating to Justin, that my sense of being okay in the world is largely dependent on the people close to me acknowledging my illness and making a similar unspoken agreement to that of my ex-boyfriend.
But that’s crazy!
I shouldn’t need any outside validation or compassion to feel safe and okay in my body, living with MS or not. Life with MS is unpredictable. But guess what? Life is unpredictable. And feeling safe is an internally generated experience. It’s not dependent on who we are spending time with (unless we are spending time with rapists or murderers or people of that ilk.)
I live with MS. That’s a reality for me right now. If you’re reading this you might be living with MS too. There are certain practical and logistical differences about our life than those of people who do not live with MS. That is true. But we cannot allow ourselves to be defined by it. We need to be vigilant about not identifying too much with our illness. We need to be aware of the ways in which we enjoy the secondary gains of being The One With The Disease and we need to eradicate these. Because as long as we are enjoying benefits of our illness, we’ll keep it around.
On the other hand, living with multiple sclerosis means we may have to choose partners differently than if we were in perfect health. Some people will get it and some won’t. Some will be more compassionate than others. I started seeing a guy once who told me he had cancer. I broke it off with him, because I knew he needed someone to be fully there for him physically and emotionally and all my resources were being routed to simply getting by as a single mom living with MS. Life with MS changes many things, including how we choose a partner.
Understanding and compassionate partners are essential. But at what point does that compassion become a crutch? How much are we using our partner’s understanding as validation that it’s okay to continue to enjoy all the benefits of being The One With The Disease? What are the unspoken ways that we require our loved ones to enable us so that we lean on them to feel safe and “properly” cared for? How does others’ compassion become our healing Kryptonite?
In my previous post about dating Superman , when I suggested that I would learn something about healing from him, I didn’t anticipate it would be this. I never anticipate it when it’s my own internal work that I have to do. That stuff still sneaks up on me. Thus the dark side of dating Superman. But not his dark side, my own.
How has living with MS impacted your relationships? Do you have victim patterns you’ve been unwilling to look at? How have you been supported by loved ones in a healthy way? Click here to share!