by Chris Bodenner
A reader writes:
I found out that I had multiple sclerosis at the age of 25. Now I am 33 and married, but dating often involved a difficult dance due to the hidden nature of my affliction. I never knew when the appropriate time was to inform potential mates of my disease and disability. I did not share the information until after a few dates because the disease posed no immediate physical threat to others and most romantic flings fizzled out quickly anyways.
However, I remember one time – weeks after informing my then-girlfriend that I had MS – when I was experiencing an exacerbation of my symptoms that required me to see the doctor, who requested that I take it easy around the apartment for a weekend. That weekend she said to me in tears, "You can't guarantee me that you are going to be OK." I didn't know how I was supposed to respond and I internalized my feelings, as many men are wont to do at that age. As time went by and I processed her words, I became angry that she would make such an accusatory statement to someone with my affliction, who was currently in the throes of a wretched exacerbation, and that she had only been dating a couple of months. I decided from that point on that I could not trust her or rely on her for emotional support. I could feel myself passive aggressively breaking up with her and hated myself for it.
I have a mostly hidden disability, a rare genetic disease that ruins my connective tissue, especially ligaments. Through hard work I walk with a cane, when many with this disease are in wheelchairs. I don't think confidence was ever my issue with dating – I'm a geek girl for one thing, and thus had a ready pool of guys who were interested in any female who could debate the finer points of Star Trek. In fact, I'm married, which is when I discovered the real downsides to disability and relationships.
He was fine with my disability when we were dating and engaged. I explained the relevant details (no biological kids for one) and my limitations. Everything seemed great; he seemed accepting and willing to look past it.
And then we married and started living with each other. It's one thing to know "this person is going to be in pain frequently for the rest of their life and will never heal" and another to live with it. It's hard to watch someone be sick or hurting or frustrated by their body's refusal to do what everyone can.
He's always taken his health for granted. I can't – I'm not healthy, and I never will be. Managing my body and working around its limits consumes a lot of time, and that impacts him too. He has admitted it is a lot harder to live with than he ever imagined. I wonder if others have better imaginations – and if his was better, would he have married me?
This is the first time I’ve ever written to the blog, since it’s the first time I’ve ever felt like an authority on a blog subject. I’m a 31-year-old straight male, and I’ve been dating a disabled girl for the last five years or so. She has muscular dystrophy and is confined to a wheelchair. She can’t walk or stand on her own, but I think it’s important to clarify that she’s not paralyzed; she’s just very weak. Even lifting her arms is very difficult, so she’s unable to perform many simple tasks like brushing her hair, cutting her food, or tying her shoes. I help with these things, and I’m sometimes surprised to find that I’m more of a nurturer than I ever would have imagined a few years ago.
It’s a permanent condition, with no cure. She gets progressively weaker, and the disease progresses at such a slow pace that the pace itself becomes its own cruelty. We slowly realize that she can’t do things she once did, but we never really talk about that.
We met through on an online dating service aimed specifically toward disabled customers. We’d both exited serious long-term relationships (with non-disabled people) a few months before we met. I admit going into the relationship I wasn’t sure if the disability was something I could manage. Even now I wonder. But still, she likes science fiction and video games, and tolerates/"enjoys" football, baseball, and soccer. So what if she has a physical imperfection. She’s just about the nicest person I’ve ever met, and I seriously doubt (with my impaired social skills, especially) that I could meet and strike up a relationship with another person with whom I’m so well matched.
In a lot of ways, I’d rather deal with the physical disability instead of someone who is coping with emotional or mental problems. There’s a lot to be said for having the condition out in the open.