Hi,
I got diagnosed last week. My family have been great, but i dont live super close to them. My friends i live near have had a reaction i wasnt expecting. Theyve been distant and havent asked me once how im doing. Honestly it feels like they dont care or just dont want to talk about it. I dont know what to do, i feel so alone.
That sounds tough. People donāt know what to say when youāre diagnosed with a chronic progressive neurological disorder. They know what to do if youāve got something that you go to the hospital for and come out cured - no problem. Thereās a protocol for that: Get Well Soon cards, volunteer rotas to pick your children up from school, all that. The thing has a narrative trajectory that people feel comfortable with. No one feels comfortable when you get an MS diagnosis because its incurable. No Get Well Soon! cards for us. Or so it feels to me. Iām sorry youāre having a tough time.
Hi Mars, Iāve had similar experiences with some friends. One, who I had known for some 40 years more or less said āso whatā. He later apologised and said he just didnāt know what to say.
Iām guessing that a lot of people know little or nothing about MS other than thatās itās something scary and something they donāt want to know about. And there are no easy things to say like hope the treatment goes well, or get well soon.
Perhaps others just donāt know what MS is and are reluctant to ask in case itās going to result in scary and emotional discussions that they canāt deal with.
I sometimes wonder if some people think it is a sort of āpseudoā disease- itās all in the mind and people should just make the effort.
My approach has tended to be one of taking control of āthe agendaā. Telling people what I have , what it might mean for me, that it wonāt affect me much in the short term but you might notice me limping a bit etc , and being a bit assertive about still meeting up etc. A sort of āit stinks and things will get worse but Iām going to carry on for as long as possibleā.
Hi @Mars1989 ! Firstly Sorry about the diagnosis, I was diagnosed myself recently, Itās been 2 weeks since Iāve been out of hospital. Thereās no worse feeling than feeling alone 
everyone for me have been very supportive however I feel like on this forum , no one knows more what your going through than the people on hereā¦ Iāve found it so reassuring and comforting in a sense. If you ever want to chat, just drop me a message 
no one should feel like they have no one.
I completely agree with the comments below. Itās like a bereavement in some ways - people donāt know what to say but trust me, itās not a life sentence! There are new drugs coming out all the time and within 10 years a diagnosis will just mean taking a pill designed for you and getting on with life as before, The myelin damage will be repaired. Watch the MS society annual lecture āMyelin repair - from lab discoveries to clinical impactā, 2024, on YouTube to hear about the advances theyāre making. Itās really impressive! Iām happy for you to contact me too if youād like a chat (I have RRMS).
Hi,
Itās hard with friends and familyā¦ Iāve had people frankly not believing I had MS, because I look ok. So they assume I am being neurotic or making it all up. That was hardest of all - just when I needed support!
And some people just donāt know what MS is. Or they will tell you their cousin has MS and sheās fineā¦
You shouldnāt have to feel isolated. If you want to chat, send me a message and maybe we can chat on the phone if that would help?
There are plenty of people here, and on the Shiftms forum, who know what itās like. People at ShiftMS can also fix you up with an āMS buddyā (someone whose had it for longer) if that would help. And if you want to talk to someone in confidence, Samaritans is also an option (there for you when your friends arenāt).