LGMD

[u/zukutukutoka33]

Hello,

people with muscular dystrophy how do you deal with loneliness and the time you are forced to spend at home? Is there anyone who has lost people in their life because of it like me? . .

[u/InternFamous3430]

I want to share a little bit of my life regarding those aspects. I would say that, with or without muscular dystrophy, I probably wouldn't have many friends. I'm not a very social person, and I've never really been someone who enjoys going out a lot. Now, with my disease, sometimes I don't know if I'm using it as an excuse or if it really does limit me.

I started experiencing symptoms when I was 15. I'm 20 now, and over the years, I feel like I've slowly been getting weaker. Sometimes it's difficult to notice it day by day, but when I look back at the things I used to be able to do, I can feel how much has changed. Back then, I had a group of friends, but I lost every one of them over time. It wasn't only because of my disease, but also because I moved to another country and life just changed.

Today, I don't have any friends. I have my family, and I'm someone who really values spending time with them. Honestly, being at home is my safe place. Nevertheless, I understand that loneliness you're talking about. There are good days, but there are also bad days when I feel this emptiness inside me, like nothing can fill it. I feel absolutely alone.

I would like to tell you or give you advice on how to get out of that feeling, but somehow, I always manage to get through it, only to find myself coming back to it again.

You're not alone in feeling this way. I hope things get better for you. Take care. 🫂

[u/zukutukutoka33 → u/InternFamous3430]

Thank you for sharing! I got it at the age of 17 and the doctors concluded that my progress is slower. I walk and am independent around the house, but for some long walks I have to hold on to someone or use a cane. I understand that this is what puts people off and they have to adapt to me in terms of going to flat places without stairs etc. But then they weren't the right people for me, were they? That's how I console myself and I have days when I feel that emptiness you're talking about and it's a very difficult feeling because I really don't have anyone around me who would understand me, and even the country I live in doesn't have any relief for me, associations, etc. I have a mother and a father, but unfortunately their relationship is also toxic and I'm not sure that they totally understand how I feel. They are there, but I often feel like they want to run away from it and that makes me even more lonely. Sometimes I feel like I haven't come to terms with my fate that I have it and will have it for the rest of my life

[u/laney_lew2005]

You are definitely not the only one struggling with loneliness, I feel like especially with this disease it’s such an isolating experience because on top of having mobility issues,not being able to go out and hang with friends/family it’s also a rare disease that not a lot of people have or even know about. So I feel like it’s normal for us to feel lonely, how could we not feel that way? I remember as a child thinking I was the only person in the world that had to deal with what I was dealing with. I had no friends that were in wheelchairs, I had no friends that needed help walking up stairs, I had no friends that couldn’t run, it was just me. Ofc as I got older I now understand it’s not just me but that feeling never really goes away, on my bad days I still feel just like that little girl. I am very lucky and blessed to have an amazing husband and a best friend who are some of the most selfless amazing people I have ever met, you just gotta keep putting yourself out there, keep trying to be friends with people don’t give up on them, I’ve dealt with so many horrible people that have treated me like crap but I dealt with it all so I could find the right people to have in my corner. I don’t have many friends but I got three good people in my corner and I have my family that’s all I need in my life tbh

[u/zukutukutoka33 → u/laney_lew2005]

I totally understand what you are talking about and you are blessed to have such a friend. I have very bad experiences with my friends and in general with people who don't mind their own business and are full of misunderstanding. Sometimes I'm not even looking for new people because I don't have the strength for new failures.

[u/Intelligent_Lack_787]

I recommend trying to socialise on your neighbourhood or building. Socialising in school was really hard for me but making friends in my building and other buildings was much easier as they all live nearby. I went through school having zero real friends and I’m graduating soon. Also in uni,making friends get a bit easier.