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    So I have found 3 of my 7 flat mates, and we have a group chat going. They are all saying that we are all going to go out together and we would be doing all these freshers events together. The only thing is I have a rare type of Muscular Dystrophy, which while I look absolutely fine, I cannot really do anything other than small amounts of walking. I can't do long walks or dancing or the majority of freshers activities. How do I tell them that I won't be able to go out with them without being a downer and without them being awkward about it? And should I tell the 3 of them now on the group chat, or wait and tell all of my flat mates in person? Thanks guys!


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    (Original post by ThatOtherMegan)
    So I have found 3 of my 7 flat mates, and we have a group chat going. They are all saying that we are all going to go out together and we would be doing all these freshers events together. The only thing is I have a rare type of Muscular Dystrophy, which while I look absolutely fine, I cannot really do anything other than small amounts of walking. I can't do long walks or dancing or the majority of freshers activities. How do I tell them that I won't be able to go out with them without being a downer and without them being awkward about it? And should I tell the 3 of them now on the group chat, or wait and tell all of my flat mates in person? Thanks guys!


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    Do what makes you feel most comfortable but make sure they know that you still want to hang out together, maybe organise a flat movie night or something like that to get to know everyone
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    (Original post by ThatOtherMegan)
    So I have found 3 of my 7 flat mates, and we have a group chat going. They are all saying that we are all going to go out together and we would be doing all these freshers events together. The only thing is I have a rare type of Muscular Dystrophy, which while I look absolutely fine, I cannot really do anything other than small amounts of walking. I can't do long walks or dancing or the majority of freshers activities. How do I tell them that I won't be able to go out with them without being a downer and without them being awkward about it? And should I tell the 3 of them now on the group chat, or wait and tell all of my flat mates in person? Thanks guys!


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    I would say do it now in the chat. It might kill the chat for a while but it gives them time to research it and understand it. Would probably stop them planning things that you wont be able to do in that chat so you dont feel left out
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    Do you have a wheelchair, so you could still go out with them? Also I would just explain your disability to them in person xxx
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    (Original post by ThatOtherMegan)
    So I have found 3 of my 7 flat mates, and we have a group chat going. They are all saying that we are all going to go out together and we would be doing all these freshers events together. The only thing is I have a rare type of Muscular Dystrophy, which while I look absolutely fine, I cannot really do anything other than small amounts of walking. I can't do long walks or dancing or the majority of freshers activities. How do I tell them that I won't be able to go out with them without being a downer and without them being awkward about it? And should I tell the 3 of them now on the group chat, or wait and tell all of my flat mates in person? Thanks guys!


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    I feel your pain man I have Myotonia I am lucky as it is localised to my left arm hands and wrists just do what you can thats what I did if you feel you can't do something just mention it you can still have fun film societies and video game nights it's not all dancing and long walks in freshers and if your going some place taxis can be very cheap if shared they will include you as much as possible and help if you need help.

    to tell them just mention it in conversation don't make a big announcement just casually and they will understand my work friends family all do their best to accommodate me and they should do the same for you so will the uni if you tell them come to think of it.
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    I would tell them online, then if they're unsure of what to say they can take some time to work out how to respond/get their heads around it

    perhaps try and think of what you want them to do, if anything, so that they don't worry about it or feel that they need to do something to accommodate you when it's not necessary - try not to be too demanding, remember they don't have an investment in you yet, but I think the idea someone else had about suggesting a pizza/movie night (perhaps on a boring looking night?) early is a good idea as it will also take the pressure off them if they feel like there's a plan to involve you in... also think if there are things you can do together in the day e.g. go shopping and split a taxi or go into town and find somewhere to get breakfast or something?
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    energy drinks also help things like rockstar if you are on the coast a trip over to the isle of wight might be fun see if anyone is up for that on a weekend.
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    do whatever you feel most comfortable with - however telling them online might give them more time to figure out what to respond, and maybe do some research if they are unsure of anything (also would avoid any awkwardness that it might be telling them in person), i would just drop it into conversation so when they next mention something say "im not sure if i can come to that because..." or something like that

    also dont worry there are plenty of other freshers events, maybe look on your su website for film nights and things, and if there isnt one then host your own!!
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    If you tell them now then at least they'll be able to take things into consideration. Obviously they'll want to go to the big events, but they may be able to think about other things that they could do that's inclusive.

    If you explain what you've got and then say that you'd still like to be around as much as possible before going out or even having a night in once or twice during freshers? You could go to the on campus bar if there is one and sit down and have a chill evening? Could have a movie night if you've got living space? You could attend pre-drinks with them?
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    I just wanted to tell you one of the things that went on at my uni the film club put on a cinema night in one of the lecture theatres so you payed something like £2.50 to get in popcorn and drinks about 50p each and then the film started usually a recent blockbuster (DVD) release like James Bond was one and I think I also saw the Avengers. so things like that sometimes happen. where are you going?
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    nah telling people about disabilties isn't being a downer. It's better than just saying 'I'm tired' since that'll look like an excuse and you might start getting annoyed they don't understand (even though you haven't told them).

    Be honest about it over the group chat but it doesn't need to be a big deal. If they don't understand or even attempt to understand, they aren't worth the time. But that's unlikely.

    you'll hear stuff like 'you look fine though!' but don't take that as an insult. It's difficult to get your head round an invisible disability even though most illnesses are invisible.
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    Say 'hey guys all our plans soundso much fun but just so you know I'll have to adapt the way I attend as I have muscular dystrophy so I can't stand that long. So if I go out I'll get a taxi and you guys will have to get me a chair.. I'll be in the party spirit as long as I'm sitting!'
    I think that if you tell these three now it'll be a less big deal telling your other flat mates... don't be embarrassed any decent person will want to make sure you are included as best as possible
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    Thank you so much guys for all your help! Just going to quickly answer some questions:
    •No, I don't have a wheelchair, but I do walk a little funny, but not many people notice.
    •I go to Hull York Medical School but I'm based at University of York.
    •I think my college has some "chill out" events planned, which I'll think I'll go to.
    •I've spoken to the uni's disability department, it's just telling my friends now.
    All your comments have been really great and I plan to casually tell them whenever they next bring freshers up! I'm just hoping they'll still treat me the same but actually acknowledge I might need help sometimes. Wish me luck!



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    (Original post by ThatOtherMegan)
    Thank you so much guys for all your help! Just going to quickly answer some questions:
    •No, I don't have a wheelchair, but I do walk a little funny, but not many people notice.
    •I go to Hull York Medical School but I'm based at University of York.
    •I don't think coke would help in this case thx doe
    •I think my college has some "chill out" events planned, which I'll think I'll go to.
    •I've spoken to the uni's disability department, it's just telling my friends now.
    All your comments have been really great and I plan to casually tell them whenever they next bring freshers up! I'm just hoping they'll still treat me the same but actually acknowledge I might need help sometimes. Wish me luck!



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    While I wish you luck, I don't think that you need it. Have fun during Freshers and your first year!
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    (Original post by ThatOtherMegan)
    Thank you so much guys for all your help! Just going to quickly answer some questions:
    •No, I don't have a wheelchair, but I do walk a little funny, but not many people notice.
    •I go to Hull York Medical School but I'm based at University of York.
    •I don't think coke would help in this case thx doe
    •I think my college has some "chill out" events planned, which I'll think I'll go to.
    •I've spoken to the uni's disability department, it's just telling my friends now.
    All your comments have been really great and I plan to casually tell them whenever they next bring freshers up! I'm just hoping they'll still treat me the same but actually acknowledge I might need help sometimes. Wish me luck!



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    if you don't mind my asking what kind of MD do you have?
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    (Original post by jonathanemptage)
    if you don't mind my asking what kind of MD do you have?
    I have 2, a mix of Limb Girdle and Congenital, which is sometimes known as FKRP Muscular Dystrophy. I was told in 2004 that only 24 people in the world have my type but I'm not sure how accurate that was and how many people have it now.


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    (Original post by ThatOtherMegan)
    I have 2, a mix of Limb Girdle and Congenital, which is sometimes known as FKRP Muscular Dystrophy. I was told in 2004 that only 24 people in the world have my type but I'm not sure how accurate that was and how many people have it now.


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    ah that sucks (I just had a look on the web it sounds awful)
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    (Original post by ThatOtherMegan)
    Thank you so much guys for all your help! Just going to quickly answer some questions:
    •No, I don't have a wheelchair, but I do walk a little funny, but not many people notice.
    •I go to Hull York Medical School but I'm based at University of York.
    •I don't think coke would help in this case thx doe
    •I think my college has some "chill out" events planned, which I'll think I'll go to.
    •I've spoken to the uni's disability department, it's just telling my friends now.
    All your comments have been really great and I plan to casually tell them whenever they next bring freshers up! I'm just hoping they'll still treat me the same but actually acknowledge I might need help sometimes. Wish me luck!



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    I think you should mention it and maybe suggest some of the events you've seen that would be more accessible? And possibly look for some more chilled bars with seating areas to show you're wanting to go out and have fun good luck for uni x
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    (Original post by ThatOtherMegan)
    I have 2, a mix of Limb Girdle and Congenital, which is sometimes known as FKRP Muscular Dystrophy. I was told in 2004 that only 24 people in the world have my type but I'm not sure how accurate that was and how many people have it now.


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    If they are decent mates they will be impressed that you are one of only 24 in the world! How many people can say that?!


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    (Original post by jonathanemptage)
    ah that sucks (I just had a look on the web it sounds awful)
    Mines actually more mild in comparison to others so I'm actually quite lucky! Some websites have symptoms included which I don't have so it might not be as bad as the one you read.


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