Last reply 1 year ago

I got my diagnosis about 6 months ago and it’s been very hard. Loosing a semester in school and not being able to work for 3 months. Now that things are better and my ms is under control I’ve started to feel lonely very very lonely. I feel alone because most people don’t understand it.

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1 year ago

Hello you, yes I got diagnosed this year too. I think when things get a bit more under control and you start getting on top of things, that’s when the contemplation phase kicks in a bit. The thing I found tough, is that I have yet to understand how this thing works with me, let alone anyone else understand it! So even if you have loved ones around, you can feel very isolated and detached. I guess I’ve had a yeAr now to get used to accommodating this and it truly does get easier. Keep putting posts on here every so often, it will make you feel part of a VIP community. We are all important and special on here! X

1 year ago

@dominiqueg , unfortunately MS is still a taboo subject. Until this changes and public awareness grows, we will feel alone.

The internet has been a godsend in this respect.

1 year ago

I’m sorry to hear this. It sounds like you’ve really been through it. I got my diagnosis in October this year and it can be extremely difficult. I managed to keep my job by reducing my hours and working from home a lot. When things settle more you’ll start feeling better. I have felt that being completely honest with friends and family is the best way and people become much more understanding. Keep smiling x 😊

1 year ago

I felt the same way for 5 yrs the yrs I was at uni. No one understood. I cried few times even infront of them and my friends at school were avoiding me maybe they felt something changed in my personality but i carried on finished uni and traveled to the uk to have masters degree and study english but master were a big high expectation so i just had 2 english qualifications and came bk home but working in uk and in saudi now showed me the bright side of the world it showed me that everyone has their own bright and dark side dont let ur loneliness beat ur soul volunteer or try to do any social activity many people will listen to ur story and even become ur mates. Of course u know all that 🙂 just a reminder cool people still exist

1 year ago

I can’t imagine what you’re going through Dominique. I’m here if you need to talk though 😊

1 year ago


I got diagnosed 6 month ago too so snap!
I know how you feel, I am beginning to feel a bit lonely too and I think Christmas highlights this more. Be gentle with yourself. I know how hard it is so don’t beat yourself up when you feel al sorts of feelings , its a rollercoaster of emotion.
The reality is setting in and I am not sure how to respond. Do you feel the same way? I am not sure what to do.
At the moment I am just trying to listen to my body and feel like a rabbit in headlights. I am trying to get through each day but it feels surreal.
I have just bee saying know sorry things are too much for me and I need to rest. Before I used to just “push on” and felt like death.
Im slowly coming round to this. I am not limiting myself but I realise I have to do things a little differently. (Its not in my nature to do this but I have to be kind to my body and listen) be honest with yourself but no limits.

I think its normal to feel lonely no matter how many years you have had it but I think its especially difficult when its new like us. Your not alone! You will get through this and be okay.

Rachael xx

1 year ago

@rachaellouise, yeah it’s overwhelming at times. When I was diagnosed I kind of didn’t really think it was real. I’d say my first treatment was a slap in the face but now I’m ok with it but sometimes I do say why me and kind of feel bad. I’m happy I have a great team around me. I’d say all my friends understand but I don’t really know my limits for now and everyone is pretty busy with the new year.

1 year ago

Hi Dominique, I know this is going to sound corny, but the night is always darkest before the dawn. The dark days push us to find the light. I don’t have ms, some people would say I’m lucky and I am. As a parent all you want is to protect your kids, my son being diagnosed came as a massive shock. I know the feeling of emptiness and it is hard when you are young and as Rachael said Christmas can highlight these things. You look around and everyone is enjoying the party but you feel distant and not part of it. I promise you it will pass and you will feel better. X

1 year ago

@rachellouise – I was diagnosed about 4/5 months ago and am still trying to adjust to everything. But I have found the loneliness of being diagnosed is helped by visiting sites like this one and reaching out and meeting/talking to others with the condition. Since being diagnosed I’ve met/talked to quite a few friends of friends with the condition which has made me realise it’s not so uncommon and I’m not alone. Still have real lows but it and have had some real blows from people who don’t understand but reaching out to find those that do does help.

1 year ago

I have been diagnosed now for 10 years and you will feel that loneliness off and on. I still feel it at times, my husband is very supportive but he doesn’t totally understand. I have never had cancer and it hard for me to understand what cancer patients are going through. Unless you have MS you can’t understand what a MSer is going through. I just had a relapse, my husband is anxious and upset because he can’t make me better. I just have to wait for the steroids to help. When I get upset I count the things I am grateful for and it always makes me feel better. I am still walking and this is the first relapse that I have had in ten years, I am grateful for that and many other things. Potter

1 year ago

@dominiqueg, I hate hearing anyone is lonely… its ironic in a world with so much communication and population density this is such a common problem across the board, magnified this time of year, it is probably exasperated by diseases like MS and I guess anyone who is sick and in a minority….

Anyhow I just wanted to offer a hug and support, and pls reach out and PM people if you need to share, offload, its good to talk… and there are great people on here


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