Sexuality when you’ve got a disabled sibling

I’ve added a new blog by Kate to my RSS feed, which I learned about from Sibnet. This part of one of her posts really, really got to me:

Some siblings talk about their concerns about the future eg Is it ok for me to move away from home? […] Will I find a partner who will help me with the responsibility? Should I have children of my own? What if they have disabilities? How will I balance their needs with my other family roles?

Lily’s been having a hard time with her seizures recently. I overheard part of an exchange between my parents while on the phone with them about this; apparently it was a big enough seizure that they decided to give her ativan. (The neurologist gave us a small prescription a long time ago when it became clear that Lily was having seizures that could be stopped at home – avoiding hospitalizations – with a small dose.) This happened the same night that I connected with someone via a dating site that I recently joined. Which immediately brought to the fore something that makes me incredibly nervous to think about and talk about. It’s one of the few things I’ve started working on in therapy but haven’t really started to feel resolved about, and one of the things I’ve wanted most to discuss with other siblings. (This is why I want my blog to be anonymous, and why I want it to be a safe space for discussion.)

It’s this: somehow, I think growing up with Lily has dramatically influenced my views on sex and sexuality. I find the idea of emotional and physical intimacy to be almost overwhelming, and usually frightening, and while some of this is surely due to my own personality and the way I would have been had she not been born this way, some of it is probably due to having been the big sister of the person she is and has always been.

Physical intimacy
Whenever sex comes up as a topic amongst coworkers or friends, over drinks or dinner, at a party or on a roadtrip, it makes me nervous. I have so little experience with sex that I feel like a fool and sometimes a fraud when I make contributions to the banter, and I usually withdraw, sometimes even leaving the room if my discomfort grows.

During high school health class, a lot of teachers try to scare students with the idea of teenage pregnancy, of the great responsibility of parenting when you’re young. I never needed that – I had Lily. I knew that Lily was a child my parents wanted and that they did everything they could to help her be healthy and well. And look how well that turned out! I’m afraid that some of that emotion, that knowledge of what weight an unwanted pregnancy could bring, never left me, and has made me extremely cautious when it comes to sex. Overly cautious, it turns out. Plus, this extends to safe sex – it’s not if but when things go wrong – so I’m hard pressed to remember that sexually transmitted infections aren’t a necessity of sex. (Yeah, the biology degrees also contribute to this paranoia. Alas.)

Does it make sense to you, as readers? Do you understand how hard it is for me to talk to prospective partners about this? “You see, I’ve got these emotional quirks based on growing up with a sister who had severe disabilities, and now I’m kind of afraid of sex.” I feel like whatever guy I might say this to would just hear, “I have sexual hangups, so you’re not gonna get laid as easily as you want.” (What I want them to hear is “I am at the point where I trust you enough to talk about something that scares me and I want your help to heal, even if that means overcoming your own anxieties about what it might mean that I’m not the sexually dynamic vixen you had hoped I might be.” Oh, did I mention that I definitely have a healthy sex drive?)

Emotional intimacy
I have the feeling that the way I feel about connecting with people may be more widespread than any of my issues with the physical part of sex. After all, many of us who have grown up with siblings with special needs, particularly the very dramatic sorts that require a lot of time and attention from parents and a lot of time at home, grow up with a limited array of friends. We have complicated feelings about our futures – I often feel like my life is not just for me. My future is tied to Lily’s future. Thus, any potential partner (and even close friend) that I invite into my life will also be involved in her life. I feel extremely fortunate that most of my current close friends understand, or do their best to understand, and they’re incredibly supportive.

But remember: Yes, there were times when I was ashamed of Lily and wouldn’t invite friends home. Yes, there were times when I wanted friends to come over and knew it wasn’t a good idea, because Lily’s health wasn’t stable at the time. I didn’t start driving until a bit later than hoped because of the complex situation of Lily’s seizures and the car that was available for me to drive. So, I didn’t date very much. I didn’t date a whole lot in college, either, but I did date. Grad school? Ha! Well, I dated, despite the intensity of the work and all the other stuff that challenged me during that time, but only had a couple of meaningful relationships. Now I’m in a position to spend time tending my social life.

Many of my friends worry about their dates meeting other friends, or family. “Meeting the parents” is a cliché in American society. For me, the litmus test is Lily. Only one of my past boyfriends has ever met Lily; that was the breakup that hit me the hardest. He was the man I considered my first love, and he was pretty damned good with Lily, and it crushed me to have lost someone I had treasured who had seemed equal to the challenge of including her in his world. This guy I just connected with? I like him just about as much as I think you can like someone at this early stage of contact. Needless to say, I had been stewing about this topic for days before I saw either the blog post or was contacted by him. And now I am sharing this deeply meaningful thing with the world, cloaked in what anonymity I can claim, because it scares the hell out of me to be faced with the unknowingness of whether this potential relationship will go anywhere, and whether these features of my past and my soul will trip me up.

* * * * *

I really have no idea how this works for other siblings. If you’re out there reading this, did your sex life or love life turn out differently than you thought, because of your sib(s)? Do you have trouble trusting people? How have you overcome any of that, if you have?


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