An honest talk about sexuality and relationships (25M SMA2)

[malkyor]

TL;DR: I'm a 25 years old dude with a severe neuromuscular disability, seeking advices and/or an honest talk about it.


I was born with Type 2 Spinal Muscular Atrophy, a neuromuscular condition that limits severe and progressively my physical capacity. Since my early teens, I need full time assistance from my family members, since I only have very limited movements in my upper limbs. I live in southern Brazil, by the way.

I've always coped pretty well with my disability, my family was always very supportive and I consider myself a happy person. Of course life have its highs and lows, but I'm pretty well resolved with most aspects of my life. I went to college, got my Masters degree in physics, and am now a second-year phD student.

My teenage/highscool years were one of these lows in my life, I had health issues and felt excluded from the things that other people of my age were living. I had few friends, went to few parties and never went further than some pathetic attempts of flirting with girls. I've always been an introverted person, so I think it was kinda natural to me stop trying at some point. I didn't feel self-pity nor anything like that, simply I've behaved as if relationships and stuff were not things intended for me. I am by no means an assexual person (I'm bisexual, btw), I had and have desires, but I've found my way of dealing with it myself (if you know what I mean) and things went pretty well.

However, lately I've been feeling lonely, and missing this important aspect of my life that is intimacy and relationships. I think I've made a mistake when I decided to stop trying, and now I want to deal with it.

I don't have many friends of my age, since I've moved from my hometown in order to make my phD, but I'm trying to be more sociable. The point is that flirting is really hard to me, since I always need to be accompanied by my mother (or by my sister, less frequently) with a some degree of proximity, and I feel awkward in most os social interactions with people of my age. I do chat with people online, and sometimes we get along pretty well, but I don't feel comfortable making the first move when I want to, because I think it could ruin one pf the few friendships I've managed to build. Never anyone made the first move with me, and it doesn't help me at all.

There are many other things that make me anxious, like how it would work if I do get a date, or how I could deal with my condition and my inexperience when the time comes, but this post is seeming more of a rant than I intend to. I think it would be nice to talk about it, maybe you could share experiences and/or advices. Also, feel free to ask me anything or contacting me if you want to.


(English is not my first language, so sorry if I did some mistakes or weird phrasing)

[Dr. BiPAP Sachin]

Mar 1, 2020 14:22:43 GMT -5 malkyor said:

TL;DR: I'm a 25 years old dude with a severe neuromuscular disability, seeking advices and/or an honest talk about it.


I was born with Type 2 Spinal Muscular Atrophy, a neuromuscular condition that limits severe and progressively my physical capacity. Since my early teens, I need full time assistance from my family members, since I only have very limited movements in my upper limbs. I live in southern Brazil, by the way.

I've always coped pretty well with my disability, my family was always very supportive and I consider myself a happy person. Of course life have its highs and lows, but I'm pretty well resolved with most aspects of my life. I went to college, got my Masters degree in physics, and am now a second-year phD student.

My teenage/highscool years were one of these lows in my life, I had health issues and felt excluded from the things that other people of my age were living. I had few friends, went to few parties and never went further than some pathetic attempts of flirting with girls. I've always been an introverted person, so I think it was kinda natural to me stop trying at some point. I didn't feel self-pity nor anything like that, simply I've behaved as if relationships and stuff were not things intended for me. I am by no means an assexual person (I'm bisexual, btw), I had and have desires, but I've found my way of dealing with it myself (if you know what I mean) and things went pretty well.

However, lately I've been feeling lonely, and missing this important aspect of my life that is intimacy and relationships. I think I've made a mistake when I decided to stop trying, and now I want to deal with it.

I don't have many friends of my age, since I've moved from my hometown in order to make my phD, but I'm trying to be more sociable. The point is that flirting is really hard to me, since I always need to be accompanied by my mother (or by my sister, less frequently) with a some degree of proximity, and I feel awkward in most os social interactions with people of my age. I do chat with people online, and sometimes we get along pretty well, but I don't feel comfortable making the first move when I want to, because I think it could ruin one pf the few friendships I've managed to build. Never anyone made the first move with me, and it doesn't help me at all.

There are many other things that make me anxious, like how it would work if I do get a date, or how I could deal with my condition and my inexperience when the time comes, but this post is seeming more of a rant than I intend to. I think it would be nice to talk about it, maybe you could share experiences and/or advices. Also, feel free to ask me anything or contacting me if you want to.


(English is not my first language, so sorry if I did some mistakes or weird phrasing)

I have Duchenne muscular dystrophy (DMD), and I'm just finishing up my PhD in mathematics! Feel free to PM me if you want to talk about PhD stuff, and other things. I don't have any girlfriend(s) yet.

[malkyor]

Mar 1, 2020 16:00:51 GMT -5 Dr. BiPAP Sachin said:

I have Duchenne muscular dystrophy (DMD), and I'm just finishing up my PhD in mathematics! Feel free to PM me if you want to talk about PhD stuff, and other things. I don't have any girlfriend(s) yet.

Cool, I can't PM you (I think it's because I'm a newbie here) but I'd love to keep in touch!

[deeva]

is it possible for you to go out without your mother? what if you had a friend or carer instead? otherwise i think you'll continue to find it difficult interacting with women IRL, especially if you reach the point of a date.

[sy]

I don't understand why PWDS can be so antisocial, I have friedreich's ataxia, but I use my wheelchair as an icebreaker, now I'm not saying I'm a Casanova with the ladies in fact I'm terrible. However it sounds like it's more of a general issue for you, all I would recommend is going out. Even if it is with your mom or sister, I'm sure they'd even wingman you and talk you up. If that's not your scene go to church, some of the most beautiful girls go to church.

[Deleted]

You may not have seen Squirmy and Grubs on YouTube, the are a couple and I’m pretty sure the boyfriend has sma. Worth watching so you can see that you can overcome any issues with your disability once you find the right partner. Good luck

[FlyingBert]

Mar 1, 2020 14:22:43 GMT -5 malkyor said:

TL;DR: I'm a 25 years old dude with a severe neuromuscular disability, seeking advices and/or an honest talk about it.


I was born with Type 2 Spinal Muscular Atrophy, a neuromuscular condition that limits severe and progressively my physical capacity. Since my early teens, I need full time assistance from my family members, since I only have very limited movements in my upper limbs. I live in southern Brazil, by the way.

I've always coped pretty well with my disability, my family was always very supportive and I consider myself a happy person. Of course life have its highs and lows, but I'm pretty well resolved with most aspects of my life. I went to college, got my Masters degree in physics, and am now a second-year phD student.

My teenage/highscool years were one of these lows in my life, I had health issues and felt excluded from the things that other people of my age were living. I had few friends, went to few parties and never went further than some pathetic attempts of flirting with girls. I've always been an introverted person, so I think it was kinda natural to me stop trying at some point. I didn't feel self-pity nor anything like that, simply I've behaved as if relationships and stuff were not things intended for me. I am by no means an assexual person (I'm bisexual, btw), I had and have desires, but I've found my way of dealing with it myself (if you know what I mean) and things went pretty well.

However, lately I've been feeling lonely, and missing this important aspect of my life that is intimacy and relationships. I think I've made a mistake when I decided to stop trying, and now I want to deal with it.

I don't have many friends of my age, since I've moved from my hometown in order to make my phD, but I'm trying to be more sociable. The point is that flirting is really hard to me, since I always need to be accompanied by my mother (or by my sister, less frequently) with a some degree of proximity, and I feel awkward in most os social interactions with people of my age. I do chat with people online, and sometimes we get along pretty well, but I don't feel comfortable making the first move when I want to, because I think it could ruin one pf the few friendships I've managed to build. Never anyone made the first move with me, and it doesn't help me at all.

There are many other things that make me anxious, like how it would work if I do get a date, or how I could deal with my condition and my inexperience when the time comes, but this post is seeming more of a rant than I intend to. I think it would be nice to talk about it, maybe you could share experiences and/or advices. Also, feel free to ask me anything or contacting me if you want to.


(English is not my first language, so sorry if I did some mistakes or weird phrasing)

What kind of care do you need from your mother when you're out? I have MD, but I use to go out with girls and the only support I need is to eat, but girls always help, there's no problem and it's fun. In fact, that let you know a lot about that person, which is a good indicator for a healthy relationship.

Maybe you need to try and go in the wild. I was in your situation and I only needed to do it in order to know it wasn't hard. Most part of our lives is our family who makes us shy, weak and make us believe we cannot live without  them, but it's not true. 

[malkyor]

Mar 4, 2020 12:26:27 GMT -5 FlyingBert said:

What kind of care do you need from your mother when you're out? I have MD, but I use to go out with girls and the only support I need is to eat, but girls always help, there's no problem and it's fun. In fact, that let you know a lot about that person, which is a good indicator for a healthy relationship.

Maybe you need to try and go in the wild. I was in your situation and I only needed to do it in order to know it wasn't hard. Most part of our lives is our family who makes us shy, weak and make us believe we cannot live without  them, but it's not true. 

I'm virtually quadriplegic, meaning that I need full assistance (like eating, moving, positioning myself more comfortably...), and I know I have a little of shyness in asking other people's help. But my family is not sabotaging me in any way, they did their best trying to educate me to cope with my condition and I believe I have a good relation with it in most aspects of my life.

I am sure that going in the wild would be something good, even if hard. Thank you for sharing your story.

[FlyingBert]

Mar 6, 2020 8:26:34 GMT -5 malkyor said:

Mar 4, 2020 12:26:27 GMT -5 FlyingBert said:

What kind of care do you need from your mother when you're out? I have MD, but I use to go out with girls and the only support I need is to eat, but girls always help, there's no problem and it's fun. In fact, that let you know a lot about that person, which is a good indicator for a healthy relationship.

Maybe you need to try and go in the wild. I was in your situation and I only needed to do it in order to know it wasn't hard. Most part of our lives is our family who makes us shy, weak and make us believe we cannot live without  them, but it's not true. 

I'm virtually quadriplegic, meaning that I need full assistance (like eating, moving, positioning myself more comfortably...), and I know I have a little of shyness in asking other people's help. But my family is not sabotaging me in any way, they did their best trying to educate me to cope with my condition and I believe I have a good relation with it in most aspects of my life.

I am sure that going in the wild would be something good, even if hard. Thank you for sharing your story.

Same as I am, could be hard to ask for help but try to tell it without asking for help, it can makes things easier. Find  other words or a fun way to say it if you need it. I'm quad too, but I usually don't need to positioning (maybe just my hand), it can be ankward if this help is needed very often, I know. But believe me, once you do, it would be easy next time, for both.

[Dr. BiPAP Sachin]

Mar 1, 2020 16:24:00 GMT -5 malkyor said:

Mar 1, 2020 16:00:51 GMT -5 Dr. BiPAP Sachin said:

I have Duchenne muscular dystrophy (DMD), and I'm just finishing up my PhD in mathematics! Feel free to PM me if you want to talk about PhD stuff, and other things. I don't have any girlfriend(s) yet.

Cool, I can't PM you (I think it's because I'm a newbie here) but I'd love to keep in touch!

You need to have at least 10 posts to be able to PM.

[brinzerdecalli]

Hey malkyor ! I have the exact same disability! I think we can be more independent than what we are told, it just takes some creativity and calculated risks. What exactly do you need help with besides bathrooming when you are out? Why can't your help [mom] be in another restaurant or even just stay at home but be ready to drive where you are if you need something? That is what I do with my nurses. I've had girls stay the night even that way, so it is all down to what you are comfortable with a date doing for you.

Feel free to ask anything here. I'm an open book and have no shame whatsoever! hahaha

[malkyor]

Mar 29, 2020 11:49:51 GMT -5 brinzerdecalli said:

Hey malkyor ! I have the exact same disability! I think we can be more independent than what we are told, it just takes some creativity and calculated risks. What exactly do you need help with besides bathrooming when you are out? Why can't your help [mom] be in another restaurant or even just stay at home but be ready to drive where you are if you need something? That is what I do with my nurses. I've had girls stay the night even that way, so it is all down to what you are comfortable with a date doing for you.

Feel free to ask anything here. I'm an open book and have no shame whatsoever! hahaha

Hi, thanks for sharing your experience! It's cool to know how other people deal with it. I kinda think that my problem is more in getting to the point of going out and stuff. I'm really introverted, but I'm trying to work it out

I can't PM you (I think it's because I'm a newbie here) but I'd love to keep in touch!

[Dr. BiPAP Sachin]

Mar 30, 2020 16:34:13 GMT -5 malkyor said:

Mar 29, 2020 11:49:51 GMT -5 brinzerdecalli said:

Hey malkyor ! I have the exact same disability! I think we can be more independent than what we are told, it just takes some creativity and calculated risks. What exactly do you need help with besides bathrooming when you are out? Why can't your help [mom] be in another restaurant or even just stay at home but be ready to drive where you are if you need something? That is what I do with my nurses. I've had girls stay the night even that way, so it is all down to what you are comfortable with a date doing for you.

Feel free to ask anything here. I'm an open book and have no shame whatsoever! hahaha

I can't PM you (I think it's because I'm a newbie here) but I'd love to keep in touch!

One more post to go, and then you can!

[brinzerdecalli]

Mar 30, 2020 16:34:13 GMT -5 malkyor said:

Mar 29, 2020 11:49:51 GMT -5 brinzerdecalli said:

Hey malkyor ! I have the exact same disability! I think we can be more independent than what we are told, it just takes some creativity and calculated risks. What exactly do you need help with besides bathrooming when you are out? Why can't your help [mom] be in another restaurant or even just stay at home but be ready to drive where you are if you need something? That is what I do with my nurses. I've had girls stay the night even that way, so it is all down to what you are comfortable with a date doing for you.

Feel free to ask anything here. I'm an open book and have no shame whatsoever! hahaha

Hi, thanks for sharing your experience! It's cool to know how other people deal with it. I kinda think that my problem is more in getting to the point of going out and stuff. I'm really introverted, but I'm trying to work it out

I can't PM you (I think it's because I'm a newbie here) but I'd love to keep in touch!

Luckily [except for right now] I am more of an extrovert-leaning ambivert, so getting out is something really I need to survive! Good luck getting out there once this covocalypse ends!

I meant feel free to ask on this forum. I don't mind talking about anything where others can read. haha

[malkyor]

Mar 30, 2020 16:47:02 GMT -5 Dr. BiPAP Sachin said:

Mar 30, 2020 16:34:13 GMT -5 malkyor said:

I can't PM you (I think it's because I'm a newbie here) but I'd love to keep in touch!

One more post to go, and then you can!

So here I go haha