Last reply 3 months ago
new to shift MS

I’m new this. Having a hard time explaining how I feel, physically and mentally. I was diagnosed in Nov 2018. In January 2019 my mother passed away. She had MS as well. Sometimes I feel like the rest of my family doesn’t know how to talk to me about my condition. I’ve had various symptoms, the biggest being nerve pain in my leg, which makes walking hard. I was wondering if others had issues trying to express themselves to friends and family when they were first diagnosed. Thanks much

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rotherhamdave
3 months ago

For me it was upsetting. I didn’t want to believe. Time went by and it started sinking in. Now I joke about it to friends as it makes me more compfier. Hi n welcome by the way 🤪


highlander
3 months ago

@lynsey_smith
Hi welcome to the club.
I go about telling people the same as @rotherhamdave
I make fun of myself, it kinda puts people more at ease when they see you make fun of yourself.
But be free and honest in answering their questions when they are asked. And they will.
Feel free to ask anything we’ll find an answer somehow.


erin_beatson
3 months ago

I have issues with this, especially with my mother. She doesn’t understand and thinks I want something from her. All I want is her friendship, but I find her unsupportive and questioning everything like when I was an underage teenager. I’m 42 years old this week! Anyways, my recommendation is to confide in family members and other who you can trust and who you know will make time for you and be willing to listen, tears and all.


stumbler
3 months ago

You might find this short leaflet useful with family:-

 

https://support.mstrust.org.uk/file/store-pdfs/Explaining-MS-to-others-WEB.pdf

 

Although parents need special/careful handling. They made you, so there can be a guilt aspect to the relationship. In this case, the first point to stress is that there is no known cause for MS. Whilst there may be a genetic link, this would only be a small part of the story, with other factors being involved in the causal scenario. It’s just the luck of the draw.


rocky
3 months ago

I have issues with this as well because I don’t want to “whine” or be coddled but it IS hard and I DO need more help. It’s a fine line for me to walk and therefore hard to discuss with people. Like you I’m newly diagnosed. I found that having small “bite sized” chats are easier for me and other people then the full on ones.


alexp1218
3 months ago

So sorry about the passing of your mom. I know it’s hard dealing with loss on top of a chronic illness is never easy. As far as talking to family if they ask a question I answer honestly and am very blunt when answering. It’s paid off. For many years I shied away from answering honestly for fear of worrying them. Now as I’ve progressed I see the error of my ways. I left everyone close to me with a false sense that it was no big deal. Now since being blunt and honest I see difference in the level of consideration regarding my limitations. Honesty is always the best policy.


stevenh67
3 months ago

I found telling my kids, they were 15 and 19, the toughest. Now we can talk about it fairly easily. I only share what makes me comfortable with people who I trust. I don’t talk about it often and just try to get on with it. I am luckier than most with symptoms and tell people that as a positive thing to try to keep positivity around me. Good luck with it all.

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