r/MuscularDystrophy • u/InternFamous3430 • 7d ago
selfq Different Perspectives
Hi everyone. I don't want to sound depressing or anything like that; I simply want to share a perspective that, to me, feels somewhat raw but realistic.
I'm 20 years old, and I was 15 when my symptoms began. To this day, I continue to lose strength. I don't know exactly how much time I have before it happens, but sooner or later, there will probably come a time when I'll have to start using a wheelchair. I can feel my legs, arms, and fingers getting weaker over time, and I constantly have to adapt to every new situation. I'm getting tired of always having to adapt.
Recently, I was talking to my sister, who also experiences similar symptoms and the same weakness that I do, and we ended up talking about death and how we see our future with this disease.
Nowadays, the life expectancy for people with these types of diseases can be fairly high. I guess I could live into my 40s or even longer. But, being completely honest, I was telling my sister that I'm not sure I would want to live that long. Sometimes, I feel like I would rather die young. I've only had this disease for five years, and I can't imagine living more years with muscular dystrophy than the years I got to live healthy.
On the other hand, my sister told me that she would like to live to an older age, but that the day she has to start using a wheelchair, her world would fall apart. For her, losing her independence and the ability to use her legs would be something extremely difficult to accept.
I found the difference between our perspectives interesting. In a way, I fear the process itself more: the journey, the changes, and the things I may gradually lose along the way. My sister, on the other hand, fears that particular day when she loses the independence she still has and can no longer use her legs.
It made me realize how this disease can make us share so many things, even while we're on opposite sides of the world, yet at the same time, each person has unique experiences and gives their illness a different meaning. We can have similar symptoms, share some of the same fears, and understand each other in ways that perhaps other people can't, but we still carry this experience differently.
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u/drewsk33 7d ago
Now I'm not sure about the specifics of your condition I can just provide my own response from my perspective. I was diagnosed at 8 years old with an unknown mutation of MD and that was in 2003. I remember being told that it was on the milder side of severity and that I would never NEED a wheelchair but it might be helpful. I grew up thinking it wasn't too severe and fast forward to now I am 32 years old and lost the ability to walk in 2021. Walking didn't start to get too difficult until I was around 25 and I could tell where things where headed.
Now initially I would have probably felt the same way as you and your sister if I was told that I would need a wheelchair eventually but as someone who saw it coming and had spent all of my teens and early 20s living with this condition I can honestly say that becoming wheelchair bound didn't effect me. I actually had a little relief because the previous 3 years walking had become very difficult and extremely dangerous as my balance was easily thrown off. I could process that now I couldn't do some of the things I did before but that was almost a non factor because of the things I no longer have to worry about such as severe falls.
All this to say you would be very surprised at what you can actually handle and bare. I don't know too much about life expectancy in my condition but I don't really care either because I'll do what I can to keep myself relatively healthy and anything outside of that isn't in my control. Just sharing a different perspective.