Don’t Be Shy, Meet Others With Multiple Sclerosis!

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A lot of people with Multiple Sclerosis are somewhat shy about it, they want to hide it. Now in some cases that is OK and some people would even say that it is the right thing to do in certain cases but when it comes to your individual life you should not be shy! It is amazing what talking to others with MS can do for you! I would not be doing as well as I am today if it was not for the many other MS friends I have made online.

That is the beauty of the internet, you can have an entirely separate life that no one else knows about but you! Sure that opens doors for all sorts of creeps but that is a totally different conversation that we are not going to get into haha… Anyways, my point is this, you want to keep your MS a secret? That is fine but you can do that while still being open about it! Join an online support group! I run one myself on Facebook, it’s a private group called MS IS BS. Since it’s private, no one can see that you are part of it and no one can see what you post in it except for other member of the group who all have MS!

I strongly recommend you try something like this out. My group is full of friendly, caring, informative people from all over the worlds, both men and woman of all different ages with all sorts of different MS experiences! Lots of people say that it is almost therapeutic to talk with others who have MS, it helps you realize that you are not alone and it helps you vent because these people truly understand exactly what you are going through! Family and friends can be as empathetic as possible but they still don’t truly get that one little thing you are trying to explain, they don’t truly understand why you are just ready to brake down do they? Other people with Multiple Sclerosis get it and once you see that it will feel so releiving!

I know it’s scary and it’s hard, you have kept this to yourself for so long but trust me when I say, it may be awkward at first but after you start talking about it you will soon find that you can’t stop talking about it! Letting it all out will make you feel better and can change your attitude which can effect your health in positive ways! And remember, if you join a group like mine, it’s private! No one can see what you are saying but other people in the group with MS! After you say what you have to say you just sign off and now no one knows about your MS. It will become a place to turn to when you need to escape your life of secrecy! Of course I would hope that after a while you would build up the courage to let people in your personal life know about your MS but not everyone wants that and I respect that but you should still be able to talk to someone about it and who better to talk to than someone else with MS who won’t judge you or get scared off!

So if your interested in giving it a try, click HERE to visit my page about my group where it will direct you how to join. You can always leave if you don’t like it but you do need a Facebook account! I hope to hear from you soon so that I can add you to a group of friends who will share a family like sense of community with you!

21 thoughts on “Don’t Be Shy, Meet Others With Multiple Sclerosis!

  • January 30, 2012 at 6:07 pm
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    His page makes you realize all of the crazy things you are feeling are totally normal and you are not alone, not to mention, makes you realize that there are some days where others are worse off so it makes you feel good to give them strength and support and takes your mind off of the not so hot day you are having!! I said that it is so odd yet such and amazing feeling to feel so close to absolute strangers, but it is so true. They GET you and become great friends!!

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  • January 30, 2012 at 6:19 pm
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    Yes, I should have mentioned that, it helps you realize that some of the weird things that pop up in your life are normal and not something to worry about!

    And one day I want to visit and meet as many of these friends as I can because we have become so close online!

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  • January 30, 2012 at 8:18 pm
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    This is an amazing group that has made the last few months so much better for me! I finally found a group of people that truly understand me and "get" what I am going through. I can vent, rant, cry, share something funny, ask what I think is an incredibly dumb question…..and not feel like an outsider. This group empowers me and we give each other a shoulder to lean on, a hug, or a huge smile when something goes well!!!
    The best part? I met someone that lives near me and we are hoping to get together soon!

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  • January 30, 2012 at 10:03 pm
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    So glad you enjoy the group and even more glad that you might be meeting someone in person! I live close to a few people in the group, one day when I have the money and time, I want to set up a lunch where we can all me somewhere central to everyone and just hang out in person!

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  • January 31, 2012 at 1:01 am
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    It's the best therapy anyone can get.. and it's not all serious, plenty laughs happen too. Xxx

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  • January 31, 2012 at 1:03 am
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    Being a member of Matt's great group is therapeutic, fun, interesting, hilarious at times, and healing. Matt's a young guy, hit with this crazy disease, and I love him for what he's done with this group!

    I'm proud to be a member of this online community, where we all understand, even if the ones we live with don't understand at all.

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  • January 31, 2012 at 1:24 am
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    Since being diagnosed mid November 2011, I have been on the MS is BS FB site almost every day. It has helped me beyond any words I can write here. Matt is an incredibly talented young guy, and for him to be struck with this debilitating (at times) disease breaks my heart. Through his adversity, he has managed to throw together a completely deverse community from all over the world. We even talk about wee and poo problems. LOL. we are all in this together, and I am extremely proud to have been invited in.

    Stephen Bleeker

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  • January 31, 2012 at 2:00 am
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    "We even talk about wee and poo problems. LOL" – I'm going to add another LOL to that and as for the rest of it thanks, Im just trying to make myself useful!

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  • January 31, 2012 at 3:49 am
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    Ive always said that i would spread good will & understanding in places you wouldnt expect, cuz thats where the most need is… Matt, what you wrote above is exactly what it's like to realize your gay & feel very alone. substitute gay for MS & reread for anyone who wants to understand.

    1 LIFE

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  • January 31, 2012 at 4:07 am
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    Im undiagnosed… Ive been feeling about 90% good now, been getting stuff done etc… but i have to say, I feel like my mind is saying "your ok now, as in "cured" "it's over etc…" Im desperate to hide in "safe" denial, maybe i dont really have MS right, RIGHT??? this is just a snapshot in undiagnosed hell. Matt i remember your YT vid where u say ur 90% good, that vid echoes in my head, until i realize your tough struggle after that…

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  • January 31, 2012 at 7:14 pm
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    Yes I understand man, and I truly hope you can find an answer soon so that you can escape that terrible limbo. Keep spreading your good will because yes, those small unrecognized places are the ones that need it most! Not everyone fits in the masses!

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  • February 1, 2012 at 12:45 am
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    When you are diagnosed with a chronic, incurable disease it is so easy to feel alone and become isolated. While your friends and family may try to understand – if you choose to disclose to them – they really don't get it.

    One of the hardest lessons I had to learn was that unless someone has MS, they will never be able to understand what you are going through on a daily basis. That's why I visit Matt's support group every day. We talk about anything and everything and have lots of laughs too! 😉 It is truly a place where I feel comfortable. I can be myself and there is no judgment. I consider everyone in the support group my friend and it would be so cool if someday we could have a get together and actually be able to meet face to face!

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  • February 1, 2012 at 2:36 am
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    "One of the hardest lessons I had to learn was that unless someone has MS, they will never be able to understand what you are going through on a daily basis."

    That may very well be the most true thing I have heard all week, granted it's only Tuesday but STILL!

    I might have to add some quotations to my MS IS BS Page from these comments!

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  • February 1, 2012 at 4:49 am
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    talked to someone today who's friends doctors took over 3 years to get her diagnosed with MS (wooow). So far, it's been 1 1/2 years for me. yes, i know it could take even longer, i also know if you dont have a diagnoses, that your SCREWED if your applying for disability, state assistance $ will probably go away then also. Not good. P.S. i cant even get the local MS clinic to return my call to ask if i can be a patient, not good. rant rant rant…

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  • February 1, 2012 at 4:56 am
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    Man, so crazy how it came some people years to get diagnosed yet for some like me it only takes a few days…. I was just looking at some of the paperwork. Went in on the 5th to see a neuro and by the 7th I officially had MS. Insane….

    But yeah my state disability ran out in less than a year I think.

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  • February 1, 2012 at 5:47 am
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    imagine getting a quick diagnoses is something to feel good about, MS is BS!!!!!!!!!!!!!!!!

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  • February 1, 2012 at 7:08 pm
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    I know, isn't that something…. I know I was "happy", just didn't want to get stuck in limbo and end up on some Mystery Diagnosis TV show haha…..

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  • December 19, 2012 at 8:26 pm
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    I have been in dignosed but have all the ms symtoms iv been refered to a nurolagist so am in limbo . I have had server lower back pain I have trouble swollowing weaknesd in arms hands and legs one knee affected and suffer tremors. And spasums in my back and above my abdomen . Further more iv felt a tight band at times like am being squeezed. I drop things . And carnt sleep iv had this for 3 yrs now still waiting. For them to decide . Stairs are hell for me and getting in a bath so have a shower find my walking has deteriarated yet there is no lessions on my MRI brain scan . But this is happening to me please am I going made .Jane Cheshire.

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