Interviews, Rants, Feelings & Opinions

The Hardest Part About Muscular Dystrophy? The Lack of Intimacy.

December 27, 2016

Five people with muscular dystrophy get real about being disabled and the need for love and sex. By Gary Bartle.

They told me it would get harder as I grew up. They said that muscular dystrophy is one of those diseases that progresses, and if it plateaus for a few years then consider yourself lucky. They said it would get harder to eat, bathe and go to the bathroom. The doctors and professionals that knew about the disease told me of all the trials and tribulations I would face as I grew older. And while I will always be grateful to those kind souls, they refused to tell me about the hardest parts: the loneliness and the lack of intimacy.

Maybe it was because they didn’t know. Maybe it was because there are solutions to almost all the other symptoms. Maybe it was because they knew I would never actually be alone. That is the inevitable paradox I do laps in daily. Because I am confined to a wheelchair and cannot really do much by myself, I require assistance with nearly every activity. I’m surrounded by people constantly. Yet the loneliness remains.

The chicken that hatches from this particular egg is a whole ‘nother thing. The loneliness is a battle; one that I often win. I have met the best people in the world. Surrounding myself with great friends and family is a remedy that soothes my soul on a regular basis. But the lack of intimacy? I have no idea how to combat that. I have made online dating profiles, spent hours on the dance floor, bought scotch I could not afford at bars I did not belong in. I am a 30-year-old virgin with no idea what to do.

I tell myself it is by choice and if I really wanted to lose that stigmatized label, then I could. The reason I repeat this lie is to assuage a (growing) number of insecurities. I have never really even talked about it aloud. And that is exactly why we are here. I recently talked to a handful of folks with muscular dystrophy. All but one have versions of a disease that leaves them tooling around town in a wheelchair. I was sitting around one day and realized that we do not talk to each other about the lack of intimacy or our sex lives. So, I asked them some questions to get at the heart of what it is like to be disabled and in need of love and sex.

Following are some selected answers from JT, Abe, Ian, and Chloe. They are all beautiful, smart and honest people in wheelchairs between the ages of 25 and 35 that opened up in ways not always discussed, even in our own community. Read on:

Gary: When was the first time you realized your diagnosis would affect your love life? In this case, love life isn’t sex life, it is just love in your life.

JT: When I was about 11 I asked a girl to dance at a school dance and she said no, but then danced with pretty much everyone else. When I was about 15 I got my friend to ask a girl out for me and her response was… “no, gross.”

Abe: Probably in high school when my friends starting getting more than serious in their relationships and going on real dates rather than group dates. I would attribute most of it to not being able to drive and at the same part not wanting my parents involved.  

Ian: I would say in middle school I realize that it would be harder for me to find a partner, or love in general. As I grew older it was definitely hard coping with that difficulty but I was mature enough to not let it ruin anything for me.

Chloe: But, in high school things changed because now kissing and sex were “the norm” and no one wanted to have that kind of relationship with me (besides other people in wheelchairs).  As I get older, that seems to get worse instead of better. I feel like men see me and think “I need someone who can take care of me when I am old, and this girl in a wheelchair can’t and, in fact, I would have to care for her, so NOPE.”

Has your family or friends ever brought your love life up? Was it jokingly, insensitive, inquisitive, or anything else?

JT: In the past they have—either pushed me to ask out girls who I know I have zero chance with, or to ask out a disabled girl which I totally don’t want for a variety of reasons. It’s just not functionally feasible.

Chloe: Of course I didn’t have a boyfriend at age 10, but my [estranged] dad would always say it was because I was in a wheelchair, I was a monster, and no one would ever love me. He said my only chance was to get good grades, get a good job, and buy someone’s love. Well, I did all the things he said and I’m still alone. Actually, my friends don’t even think of me as sexual, I don’t think. Even at work, my coworkers will try to set up new colleagues with their spouses’ single friends, but I have never once been set up. I might as well be an android and I often wish I was. Or that I had a sex robot.

How often do you think about relationships? How often do you think about sex? While thinking about them, does your diagnosis enter your mind at all?

JT: I think about relationships almost daily. Especially being older I see all my friends getting married and having kids. It’s tough. I want that too. I know disabled people who have that so it’s possible, I just have no clue how they did it, or how to find someone who is okay with me being disabled. I’m getting weaker so that makes it worse, too. Being a guy, girls want someone to protect them and help with the hard work, and I can’t offer that.

Abe: I think about relationships far too often because whether I like it or not I’m not getting any younger and I still have things I would like to accomplish. It would be a lie to say I never think about sex but it’s not super often because sex without love is just sex.

Chloe: I think about both all day, every day. I might be in my mid-thirties, but I have the libido of a teenage boy. When I think about sex, I’m just thinking about sex. But if I think about being in a relationship, then it feels hopeless because no one (that I’ve met) wants a relationship with a girl in a wheelchair.

Have you ever been in a long relationship? How did your dystrophy affect that?

Abe: I was in a year-and-a-half long relationship my senior year of college. She wasn’t bothered one bit by my dystrophy—her parents, however, were not approving of the relationship and it caused issues from time to time.

Ian: I’m currently in a relationship. We met online and began talking frequently almost immediately. I made sure I let her know about my disability really early on as I was very interested in her and not only wanted to be fair to her but also to be closer to her, and that would’ve have happened if I wasn’t open about everything.

Do you think your dystrophy has affected your POTENTIAL love life? How?

Ian: Yes it definitely has. It took a long time for me to actually find somebody I love and actually have the person feel the same about me. My potential opportunities for meeting are definitely limited as well, as it is not as easy for me to go out to places, work, or do anything outside of a computer.

Chloe: Being in a wheelchair also limits where I can meet people because I have to rely on other people for transportation and I can only go places that are accessible. If I could walk, I could travel the whole world looking for love, and I would, but stairs and cobblestone roads are my kryptonite.  

Are you lonely? If so, when does it hit you? If no, what advice would you give to similar folks?

Ian: No, not necessarily. Even when I was single I was very good at blocking or ignoring issues that I have. There was definitely times where it hit me hard, but I was always able to get over it and think about the bigger picture which is your current life situation and how to better that.

Chloe: I am often lonely. It hits me from when I wake up in the morning until I go to bed at night.  Nearly all of my friends are married and/or have children so even having that companionship is difficult because they are always busy with their own lives. I try to stay busy with books and TV, but then the media is constantly reinforcing ideal romantic relationships and I feel like it’s being shoved down my throat. I wish society would put forth the message that it was OK to be single, especially as a woman.

Have you ever used the Internet to find love or sex? How? How’d that go?

Abe: I have a couple different dating profiles up because I’m not networking as much as I did in college, so I need to meet people somewhere. It hasn’t been spectacular, but I have met a couple girls so it’s not totally worthless.

Ian: I have used dating websites that have been unsuccessful. Any “Match” never really appealed to me. I did find my current girlfriend in an online game, but it was just a lucky situation for that to happen. I wasn’t playing the game to necessarily find somebody, but it can definitely happen when two people share a common interest.

Chloe: I have in my profile that I am in a wheelchair because when I first started online dating I chatted with this seemingly amazing man for 48 hours straight and he asked me out. I felt like I needed to tell him I was in a wheelchair, but then he exploded on me for being a liar and betraying him. It was very hurtful because a wheelchair is just a device, like glasses or a retainer. I am still the person he was talking to.

Are you more, or less, attracted to people with similar diagnoses?

JT: Neither really. There’s some really pretty girls out there but I just don’t think it would feasibly work…. getting two chairs in a van or going out with two chairs.

Abe: I am not attracted to people with similar diagnoses because I know what I want from a relationship and the functionality would not be there. Plus the need for two care people in our lives all the time would get very old.

When thinking about your sexual history, what sort of feelings does it bring out?

JT: Depressing and feeling left out.

Abe: As sinister as it sounds, I’m not going to die a virgin and that lets me breathe easier every day.

Ian: Regret mostly. I know for a fact if I was more able-bodied meeting women and sex would never be an issue for me. I am definitely not the socially awkward type or nervous talking to people. I am easy to get along with, chill, and a very confident man.

Chloe: Wistful, melancholy, grief, heartache. There’s this quote I love by the writer Dante: “There is no greater sorrow than to recall in misery the time when we were happy” and I think it sums up my love life. When I was dating, I would think about every touch and glance with total bliss.  Now, when I think about those same moments (and I do, all day) I feel like I am drowning in sorrow.

What was the single most romantic event of your life?

Abe: I would have to say the night I lost my virginity. We had been dating for a while and were laying in bed watching a movie and messing around when we both pretty much said it’s happening right now. It was very real and passionate.

Ian: Spending a whole day with my gf on skype just talking, flirting, playing games with each other online, and getting each other off sexually.

JT: None.

Do you self-pleasure? If so, and only if you’re comfortable, tell me how it differs from what people would consider average masturbation techniques.

JT: I used to be able to but can’t anymore due to loss of strength

Abe: My hands and arms are good enough to do the motions but it’s not super easy to get myself out. So it’s not uncommon to have to self pleasure in my shorts—it’s not impossible, but it’s a good thing that my imagination is vivid.

Ian: Time to time. I have a spinal cord injury which prevents me from masturbating anymore but I can still get aroused and everything involved. It’s just a lot more mental now in order for me to receive pleasure as physically I cannot masturbate like I could years ago.

Chloe: Sometimes, but not as much anymore because it makes me sad to be alone. It differs because I am basically dry humping myself – I move my hips back and forth while sitting in my chair and I can get off pretty easily.

Every single person has insecurities about their body, what are yours?

Abe: I would say pubic hair. My family still does a majority of my care so getting shaved or trimmed is still a little awkward and the conversation about needing it done is even worse. Usually I suck it up and get it over with but there are times it’s a jungle down there.

Ian: Strictly the physically-dependent-on-a-wheelchair part of my body. Unfortunately that is a big insecurity for me. But I don’t really have small insecurities about face, penis size, hair or anything.

Chloe: My body is very crooked from my disease, which causes my spine to curve sideways.  So, I sit crooked and it’s very noticeable. I also have very thin arms/wrists because my disease causes our muscles to die, so I’m literally skin and bones in my arms. I’m sounding pretty damn attractive now, aren’t I?

Finally, what’s one thing you wish people understood more about love and sex in your life?

JT: That I’m just the same as anyone else. I have the same needs, fantasies and desires as anyone. People sometimes say I should lower my standards… but why? To be in a relationship with someone you don’t like or aren’t attracted to?

Abe: Above all else I am a person. I have needs and desires, goals and dreams, hope and ambition, and I feel just like everyone else. Things might be a little different because I have MD but it’s not going to slow me down. I have lived it for 27 years and I learned some cool tricks along the way.

Ian: Probably that just because I’m in a wheelchair doesn’t mean I am a useless lover, can’t have sex, am really unhealthy etc. I feel like there is definitely a stigma that goes along with disabilities—a stereotype that just because you’re physically disabled you are also mentally disabled, and that bothers me extremely. I’m a very loving person, even if it may be very intimidating for someone to introduce themselves to me. Just because I’m in a wheelchair does not mean my dick doesn’t work, either.

Chloe: I wish people understood that people with disabilities are humans and we have a sex drive, even if that makes people uncomfortable. I have all the same sex organs as any other woman, and they work the same way. I think online dating apps have made people way pickier because they give you this idea that there is a nearly endless supply of people to date so everyone has become more superficial, which I didn’t even know was possible. I wish there wasn’t as much pressure to be in a relationship – I am tired of media bombarding us with these ideas of only having worth if you’re in a couple, and that’s not fair to anyone. A lot of guys jump straight to the conclusion that if they dated me, they’d have to be my caretaker, and that isn’t necessarily the case. Everyone deserves love. To build a lasting relationship, we need to get past the swipe-left mentality and try to get to know who people really are.  

Gary Bartle is a freelance writer from metro Detroit who apologizes for staring, he just thought you were Ryan Gosling. 

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