Last reply



I'm newly diagnosed and beginning to notice people getting frustrated hearing about symptoms I'm experiencing. I've always been the person to share my woes (happily listen in return). But this is pretty big compared to the stuff in the past. Do I keep this stuff to myself from now on?



Hi CharlieBug I think awareness is important. If you're finding people are getting frustrated, maybe you can ask them why that may be, or be more selective. We all have things going on for us and sometimes it's just finding the right time. I'm in a similar situation. I've chosen to be selective with my friends and even my family. I've chosen a good friend that I can share how I'm feeling on a regular basis, they also support me on my not so good days. At work I've noticed that it's not quite the same. Instead I feel like I need to explain myself or justify myself on days when my symptoms are more prominent. To address this I've arrange a disability awareness training specifically for my colleagues. We're a fairly small team, and I've found the support through Access to Work who has funded it. I really hope this will help. We've not had the training as yet, so fingers crossed. Wishing you all the best.




There's no right or wrong in over sharing but choose your listeners well. Some people simply don't care or who had tons of stuff that they're already dealing with. I have only a few people that I share with, and that's when I know they can take it or are in a good mood. I use this forum to share and discus symptoms and understand what I'm facing. Some people just don't get it. They cannot comprehend that your body might be facing a couple of issues (numbness, balance, tingle, whatever, etc...) at the same time. They can't even fathom that it can differ on each day. Once I was telling a friend the my left leg was weker, then she's like, 'didn't you say that your hands is all tingly the other day?" I said, 'and that too.' She got this weird look on her face and I told myself that she's off the list for sharing *_*




Ik how u feel unless you know someone with ms who you can talk to other ppl sadly just don’t get it. I’m sure some try their best and others just don’t give a 💩 but I’d personally find someone who has ms and become friends that way you can talk to them and help each other.




I was also diagnosed last month, and honestly I think letting everyone in my life know what was happening immediately was the best thing I did. I don't have to worry about the "secret" of it and can live openly and honestly. I was lucky in this respect that I had my first sign of MS five years ago, as being scared about going onto develop MS was something I "overshared" a lot about then, and it really taught me who were my friends and who weren't. Five years on, now having just had my second attack, I have a wonderful group of people around me who I can turn to however I'm feeling, and they're happy to listen. I'm in a similar place to you, having only just been diagnosed, but the way I'm moving forward is to live openly and honestly, no keeping it to myself. Talking is about just the best act of self-care we can do right now in my opinion. That said, I'm making sure to seek professional mental health help as well, because as wonderful as my friends are I think it's important to not put all of the weight of carrying my mental health on them as well. But for both of us this is still fresh, it's still a shock, and I think yes absolutely talk to the people around you about this. There are days I've been so low with the weight of this and talking is the only thing that's pulled me back up and allowed me to feel more like myself. Do not feel guilty for reaching out, or as if you need to stuff this down, you're talking because it's what you need to get through this. I think going through something like this, a patient ear is honestly the bare minimum we deserve.




MS is still a taboo subject, like chatting about death. It makes people uncomfortable, especially the ignorant!




the best thing for me was getting a buddy through the shift.ms buddy network. This was someone who really understood what I was going through and was easier to talk to as I processed through my new diagnosis. My friends and family wanted to support me, but they didn't always know how. Not to mention they were learning to come to terms with my new diagnosis as well.




Hi, I must admit that sharing is super important. I have shared my diagnosis with some people close to me, but not everyone, yet. I am talking to a therapist from one of the MS charities soon. This year has been especially difficult because of lockdowns. I hope to join a group in my area once covid restrictions are lifted. I guess the only way to determine who you want to talk to requires some trial and error. Good luck 🤞




I really hope you have a support network that you feel you can talk to! However please share with us. Whenever!!! Xx