To the Newly Diagnosed…

Written by on July 22nd, 2014 – 6 Comments

I pose a question to you … WHEN do you like to be reached out to? How often? Do you prefer someone of the same sex? Does age matter? What are your main concerns? It seems like ages ago that I had all these same questions but I was on the other side of the line … I felt like I had no one to talk to.

I am part of a newly diagnosed group, and our volunteer role is to reach out to newly diagnosed individuals.  Often I find myself wondering; am I pushy? Am I neglecting? Am I over bearing? Am I scary? A million questions float through my head.

I often find that the volunteer who has had MS for 10 years now is often as nervous as the newly diagnosed patient.  Will I be good enough? Will I be able to answer all the questions? Will I come off like I am a pro at this? How can I show that I too was once unsure of the future, and that I still get scared when I have a relapse.

So newly diagnosed … what do you prefer when you meet someone who is more experienced with MS? And what do you HATE?

THANKS IN ADVANCE! 🙂

6 Responses

  1. awraight says:

    Hey spicy,

    I’m new here, but I am really happy to see there is some support for MS patients.

    I was diagnosed back in February this year while at Basic Training for the Canadian Forces. I can relate to the feelings you have about not really being able to talk to anyone. As someone who is now getting on track, I think that what I desire most from a person more practiced in the art of living with MS is just a sounding post. For the first little while, I think just talking to someone who knows what I’m talking about is important; I don’t have to explain this procedure or fill them in on this DMD.

    I honestly haven’t spoken to anyone else who has MS, so I can’t tell you from experience. But I think that a good ear and not jumping in too often is good, since this disease affects us all differently.

    • spicy says:

      thanks so much for the info – this is good to know!!! I spoke at a newly diagnosed session on Sunday and this was running through my head 🙂

  2. Megan says:

    Hey,

    I’m about as newly diagnosed as you can get (Diagnosed 3 days ago). All I can say is wow, it’s a little overwhelming as I’m sure you all know, all of a sudden I have to take new vitamins, choose a treatment plan and figure out who to tell and how to tell them.

    I don’t want anyone to feel sorry for me is the biggest thing. I know there will be plenty of questions as I have a million questions myself, I’m afraid that I won’t be able to explain things the way they should. And explain what is going to happen and what to expect because honestly I have no idea as I know this disease affects everyone differently.

    If anyone has any advice that you would’ve liked to know looking back to when you were diagnosed it would be much appreciated 🙂

    Thanks!

    Megan

  3. spicy says:

    MEgan, I’m sorry to hear about your diagnosis – but know that you are NOT alone!!! Yes it is very overwhelming and just when you think you got it figured out, your thrown for a loop!!

    As I’m sure there are many questions that you have that you may not want to post on here – PLEASE feel free to send me an email and I would be happy to chat with you, learn, and hopefully answer some questions/share some insight!!

    lacey.andreas@Hotmail.com

    HOpe to hear from you 🙂 HANG IN THERE! !!!maybe give me a heads up if you do email me incase your email goes into my junk mail

  4. juliannek says:

    I was diagnosed three months ago…and living in a small town I’ve had a hard time finding anyone around my age living with MS or even knowing much about it at all. The first couple of months would have been hard to talk much as I couldn’t reallly explain how I felt in words…but now as the shock is thawing out and I’m realizing this is never going away I have had all sorts of ups and downs and would love to have some help and understanding…because although I have caring and supportive people in my life they find it hard to understand such a complicated and unpredictable disease. I think just letting new people know you understand and relate to all these feelings and worries would be most beneficial because living with this has made me feel isolated and alone because I cant find the right words to explain to anyone how I feel…having someone around who understood would remind you it’s not a lone battle.

    • spicy says:

      thanks for sharing your story Julianne! I too was diagnosed in a small town in between university finals, so I also had the feeling of loneliness. I completely agree – having people there for you is great, but it’s really hard to articulate how you feel. thanks for the information and tips to talk to newly diagnosed! I spoke at a session 2 weeks ago and I tried to make your point clear “that we are not alone”