I had a massive brain stem stroke just under 3 years ago aged 29 and I’m really struggling. I have emotional lability and cry a lot . I know how far I hAve come I was paralysed initially and I’m walking with a stick but I am not the same person. I feel like I have no crack anymore, I don’t find things my friends find funny I feel so isolated and lonely and I feel aside my friends sometimes don’t bother. I’m very jealous (always have) and I feel left out. I was sacked from work so I started university and feel like I have no friends. I try to do newthi gs but on my own with a mobility issue can be difficult and I’m just at a loss as what to do. My friendship group now feel like strangers and maybe a lot of it is in my head but I just don’t know where to even start. I was so used to being independent Annie.  

Without knowing your circumstances, and what's available locally to you,  it's hard to offer advice. Please don't take any of this as condescending, especially if you have already tried some of these suggestions:


Find your local Stroke Association and make contact. Speaking with people with similar experiences can be very helpful. 


Are there any other voluntary organisations that focus on tackling loneliness? My local library service have 'knit and natter'sessions to bring people together. Keep in any social contacts are so useful.


Take up a new hobby. Doesn't need to anything as taxing as an education class. Find something that you can enjoy. I took up writing, and even though I know hardly anyone reads my stuff, the writing itself is therapeutic.


Finally, and this is the hardest bit, let people know how you are feeling. Don't bottle it up. You may be surprised how much others want to help, but are anxious about being rebuffed.

Stroke is such a cruel event, and it has long-term repercussions which are also difficult to cope with.  

My husband also finds social situations quite difficult now, and it's awkward when others are laughing but it doesn't hit your own funny bone.  That's very isolating even in a group.  

You are not in an easy situation, especially if you previously enjoyed your independence.  I don't know if this is a completely useless idea, but do you think you might be able to do any volunteering, I know that Colin, on this site, has found this very rewarding, and it has led to progress, as well as the satisfaction of being able to help others.  

Please don't feel lonely, there are people here to support you, who are experiencing the same struggles, so they understand.  Take good care xx 

Thankyou for this I have looked into volunteering at the rehab ward I was in which I’m currently going through the process of doing.

my. Problem is talking- telling people how I feel doesn’t come easy and as I get upset I feel embarrassed and it’s a vicious circle.


Thankyou for this, I’m currently looking at volunteering and am in the process of jumping through the necessary hoops.

i find talking very difficult as I get upset then embarrassed and I’m not sure how to approach the subject with people

Whenever my husband has been in hospital I've always wondered whether there is anything I could do, I think maybe it's something I'll look into when I retire.  Hospital can be a really scary place, and maybe if someone doesn't have many visitors they may welcome a friendly face - they can do the talking, it will take the pressure off of you.  Try not to feel embarrassed, stroke is a really emotional thing, most SS suffer this (and so do we, the family/carers/partners).  Sometimes I allow myself to cry for a set amount of time, maybe 3 minutes, then tell myself that's enough and I try to have a distraction at the ready, it doesn't always work, but I think it acknowledges that you can't always internalise things, sometimes it has to be released!  

I'm pleased you have already taken action on this, and hope it is rewarding for you - you never know what it might lead to...?


I know it's easy for me to say, but you have nothing to be embarassed about. Wanting to volunteer, and help out other people is a really positive thing to do. Good for your own confidence, self-esteem, and sense of purpose. Also helps keep you connected with other people, which is equally important.


One of the hardest part of my recovery from a TIA was dealing with the emotional and relationship issues. The medical treatment was first class, and all the early mobility problems have been resolved. The non-physical stuff I had to battle with myself. Family, friends and work colleagues were great, but I think a combination of their nervousness about "interfering", plus my stubbornness in not asking for help, held me back.

In hindsight, I didn't want to accept there was anything "wrong" with me, and as there were no outward signs of my "problems" it seemed comfortable to carry on regardless.


I wish I had been more honest with myself, and those around me, much earlier.

This definitely rings a bell!

Hi Adrian, 

Maybe as S.S's if we we could be brave and get out there we could help educate people that life isn't always perfect.  That sometimes people speak differently and walk differently.  But no matter what is different about us we can still contribute.  That's why I'm determined to return to work.  I don't know one "disabled" nurse employed at the hospital I work at. So hopefully I can be one of the first.

As you said in your post we need to be honest with ourselves and ask for help and talk about the issues that affect S.S's.

Kind Regards 



Hi Kay - you will be a great trail-blazer, go get 'em!!  You will probably have greater empathy with your patients after all you have been through.  

Good luck xx

Dear Sassywak

So sorry to learn of your stroke.

The stroke that bit me was 13/12/2015 so you and me are in a similar situation as far as timing goes. I was paralysed on day one. But I have been so lucky and got most of my mobility back quite quickly. I rarely use my walking stick, just on the very bad days.

The crying thing is a problem isnt it. Before stroke I never cried, but I do now.

I had counselling from a stroke trained professional. That helped me a lot. I attend a group relax session monthy and that helps. I am conitinually learning about what is going on in my brain, and what is not going on. Professional help is essential for me.

I have just ventured in to a tiny voluntary job. It is not easy. I was exhausted by all of it at first. This morning I am going out to see my first new customer. No way could I have done this last year.

It is hard to accept, but you and me and the rest of us SS are not the same as pre stroke. The old Sassywak has gone. Not coming back. But new Sassywak is forming and we have to learn to be that new person. Only another SS understands what we are going through. Whatever made pre stroke friends special has finished. Unlikely they will be your post stroke friend. People who never met you pre stroke are the ones to concentrate on.  Yes I agree with exactly what you said "so isolated and lonely and I feel aside my friends sometimes don’t bother. I’m very jealous (always have) and I feel left out." I recognize that very much.

We are at the beginning of a new life. It took about 25 years to learn about life the first time around, now we have to learn again in just a few years. I think we need to look at everything we can do. 

Something I am very unsure about is how to approach people. I am inclined to tell them I am brain damaged. However, some of my SS online buddies do not do this. They carry on and accept how they are treated, I think perhaps they are right.

What I am certain about is that humans can not accept you are ill when you look well. Most of us look well. The medication tans a little and then we also spend more time outside, even just sitting out. So we look well.

I am so impressed that you can go to university. That would be way beyond me, at least for the time being.

I do advise getting some professional help.Then you have something to work on.

Our recoveries go on for as long as we need it. So never ever give up.

Be positive

Smile a lot

Lots of us are out here, willing you on. You arent alone.


Thank you for this support. I took steps to express to my friends how I was feeling, we have arranged an evening to get together to talk about this.

i am currently awaiting further instructions on volunteering so I feel positive about this.

I have attended therapy which has been useful but I do not think all my issues were covered hence the decision to speak about how I feel.

thanks for the kind words, this is something I feel is very useful as a stroke survivor I sometimes feel very misunderstood.

Dear Sassywak

If you are meeting with friends to discuss stroke, might some of the SA leaflets be a good starting point ? I havent heard of much success with explaining to friends etc and maybe you will lead the way.

When I attended the local stroke group (the Stroke association do not cover my area) it was like being wrapped in a warm blanket. Only another SS understands our issues. 

I often will compare our recovery with that of someone who has lost  a leg. It doesnt regrow and the loss never gets better. But we do manage to work around the loss.

Time for supper. Fabulous sunset here tonight.


Yes, I also thought this so I printed off somethings and I’ve wrote a letter to each of them. I feel like it’s going to be a witch hunt but I can only see what happens, feelings expressed were of upset that I couldn’t speak to them and that if I don’t say anything how do they know? Which I agree with. I have reached out to a local charity headway and am meeting them in a few weeks so I feel slightly more positive than I felt when I initially made the post. Thankyou take care and enjoy your supper

It won't be a witch hunt. More likely to attract hugs. You are opening the door to allow your friends to re-enter your life. They will appreciate the invitation.

Do you have a copy of your MRI scan?  We find that people are quite dumb-founded when they see the damage that has occurred to the brain, and helps them to go someway to realising what you're dealing with.  

Very best of luck - xx

I’m not so sure judging by some of the messages I have received- maybe that’s me being cynical but heyho

I may have somewhere, thanks for that!

Hello . Thankyou for your post. I have no words of wisdom, but I totally `get` what you are saying. The emotional liability is difficult to explain and understand to others. I think you are massively brave to start a university course, that is way beyond what I would/could even contemplate,although fortunately I was supported by my employer and now work part time from home but I dont feel part of anything, work or social. Living alone is hard, but there is no way i can change that. I sometimes read this forum and wonder what is wrong with me, as there is so much positivity, and I really appreciate the wise words and it lifts me up, but its short lived and I soon return to my level of self negativity. All I can do is send you best wishes and some people do understand what you are going through, and thank you to all the other posters who have words of wisdom and advice. 


Thanks for your comment. Well done for getting back to work- my employers weren’t as supportive and through loopholes got rid of me- I did have part in this and though sod em! I chose to go to uni because I can’t do nothing. It has been hard but I love it. I’m glad I’ve found places like this because it does make me realise I’m not on my own however lonely I feel. Take carw