Need advice on telling others

For questions on how to support loved ones with MS.
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Re: Need advice on telling others

Post by amberfer » Thu Dec 19, 2013 9:19 pm

Fayruz wrote:Maybe my approach to telling could be helpful for someone so I am writing this here...I have told my friends (some of them only recently) and I think I found the right way to tell it. I am actually quite mad at the way that MS is presented in media especially movies - it's the end of the world, no way out jada jada... I hate that because people have this image in their heads and when you tell them they look at you like you're going to collapse any minute now. So, I start with that that I have a condition that is not curable (yet) and I tell them about myelin etc, I also tell them that it's different for every patient. I try to explain them how I felt or how the symptoms feel - like somebody would put a vibrating mobile phone in my leg, like someone would strap my right arm to my body with a arm band, you can flex it but not to the full etc. And in the end I tell them the name of this thing - MS. I also emphasize that that is my experience so far and that it could change tomorrow, in the next months or never. There are just no guarantees...for any of us but I think the people with (any kind of ) diagnosis are just more aware of it.
I love it!

In response to the OP (even though this was posted years ago), I made it very clear to my family who it was, and was not, okay to tell. Before my dx, I told my immediate family and one close friend. Afterward, I told the staff only at my church, for prayer purposes. I then felt that I wanted to announce it on Facebook, because I had sequestered myself for several months because I didn't want people to see me limping around. Everyone is different, and my public method (I blog as well!) really helped me. Of course I got plenty of unwanted advice (the first person who responded when I announced my dx said, "Are you sure?" Um, here are my MRIs, here are my lab results, here are my symptoms - wait, none of this is your business, and I have a diagnosis from a doctor - YES I am sure!

Going public got me a lot of offers for help, and I learned to accept them, and even to ask for what I need. I am an extrovert and now I can't drive so I need people to come to me. I posted once, "Anyone up for taking me to the store? I need some new clothes." I got ELEVEN responses from people willing to do that (probably because I dress like a homeschooler, which I can say because I was homeschooled...). But yes, everyone is so different! Since my disability is so obvious (wheelchair most of the time,) I decided to just go public.

This also helped me set the tone: I was positive, I included a link to the National MS Society so people could learn about it, I reiterated that I was NOT in a lot of pain so people wouldn't be overly heartbroken for me. I reminded them that this isn't a terminal disease; and many with MS have much worse symptoms than I do, and I have so much support, I cannot help but be overwhelmingly grateful. Setting the tone also helped me in my own processing.

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Re: Need advice on telling others

Post by MSKarateka » Sat Jul 01, 2017 2:34 pm

When I found out it was because I thought I had a pinched nerve or something. The Doctor kept running tests for different things and they were ruled out. My other half was part of this process. I did not tell my mother. I waited until I had a diagnosis. When I told her I began by telling her that I would not be answering any questions as I had no answers at that point. (I am starting treatment soon). I have only informed my immediate family, a couple college professors and my Sensei. I have not told anyone at work (except my Sensei as he is one of my supervisors). Fortunately, I can trade shifts pretty easily if needed, and Mondays and Tuesdays are my days off.

If you did not know about my MS, you would not suspect. I really only weave some when I walk without paying attention and have numb feet. I also have no pain.

I consider it a need to know thing.

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