Log in
22,374 members17,763 posts


Hi, i'm wondering how many people feel really lonely with this illness. i feel my social circle is getting smaller and smaller. My mum died last April from immune disorders and heart failure and since then i just feel so terribly lonely. I miss just calling her up or going for walks. This evening i drove to her old place and just sat in the car. I know i'm depressed because i keep crying all the time.

My friend since my teens has moved to Spain and starting a new life there...we hardly speak anymore. She is busy teaching English and has met many new friends. My other friends work and have family and i feel like i'll bring them down if i talk about how i feel. I have a few auto immune diseases and hardly go out anymore. When i do mix with people i feel like the odd one out. I can't keep up with social activities and feel i'm left behind because of these illnesses. Sometimes i even get paranoid and feel they would rather i wasn't around. I have tried a few antidepressant drugs but felt more spaced out with them. I'm stuck in a rut.

I used to be really artistic but even that eludes me now. Its like i don't have any dreams or ambitions anymore. i know this is depressing, but no one understands. I go to choir once a week when i feel up to it...but feel i don't fit in there either. I'm ultra sensitive and worry what people think of me. Am i going crazy? i don't know. Anyone have similar issues? x

11 Replies

I know exactly how u feel. My best friend of 22 years recently decided that she couldn't handle the fact that my lupus has started 2 affect my CNS (cheers love, how do u think I feel?!) despite the fact that we were friends b4 I was diagnosed! Considering I have helped her thru a lot of shit (2 failed marriages, her brothers suicide, 2 pregnancies & births blah blah) she couldn't b there 4 me the 1 & only time I've asked 4 her help. Just goes 2 show eh?

I also had 2 give up work 2 years ago due 2 an ongoing flare so yes, I get lonely.

I have luckily reached the stage now where I honestly don't give a toss what people think of me, I have too much other crap 2 deal with & life is far too short. Luckily I have a very supportive partner, a father who still c's me as his 'little girl' (bless him) who phones & regularly visits & there r some lovely people on here that I chat 2. U're not going crazy honey, it can b a very isolating illness as people don't understand what u're going through & lupus can actually affect u're emotions & cause depression. If u feel u may b heading that way, talk 2 some1 or even u're GP, sometimes we need that extra bit of help & a little lift & it doesn't make u any less of a person 2 admit that. Plus, there r always people on here who will chat if u need some1 2 talk 2 x


Off topic I know, but when you write " I honestly don't give a toss what people think of me, I have too much other crap 2 deal with & life is far too short" I totally agree.

Some of my neighbours have got up in arms about the fact that the ancient campervan I bought when I lost my job last year after kidney failure and chemo is parked (legally on a public road, and not in front of their house), and thus prevents them from parking their 3 cars all in a line. Get a life - and get some real problems, neighbours!


It's horrible feeling like that, I came on here a few weeks ago, venting how depressed and lonely I feel, I use to be outgoing sociable out partying, now I sit in the house and basically do nothing..... I Have no motivation to do anything, And just want to cry, i am sorry you feel this way, it sucks! like Sher says there is always someone on this site who will chat... I felt relief, if that's the right word, it was nice to have people give me some support, people that understand what you are going through. you ain't crazy, you just have a lot to deal with and it can be hard when you feel you can't talk to people around you. Take care :-)


Lupus can be very isolating, even when your surrounded by people. Added to that you are still grieving for your mum, and it does take time to heal.

You say you are artistic. Have you consisered joining a local art group. My daughters go to one for life drawing. Iv'e even gone along for one session. I found there were others there with health problems as they tend to be older, so i wasn't the only one. I found it all very theraputic.


I feel so sorry for you, I can identify with everything you have been experiencing and wish there was something I could say which would make things better.It's so sad to hear about your mum, mine died when I was 21 and I then had one of my worst flares so it could be that your loss has made your health worse which is why you are feeling so bad.I still miss her terribly after 30 years as no-one understands you or cares about you like your own mum.Loneliness is a terrible thing and having a chronic illness is very isolating, as in my experience, most people aren't really that interested, sounds cynical I know.However, I think even without illness you will find that people move in and out of your life so perhaps it was just time for your friend to move on.As you get older it seems harder to make new friends as people are often in relationships or have families which take up their time and energy so they are less willing to spend time out of work with others.All you can do is try to keep in touch as best you can with the friends who do seem to care and let the others go. It may be difficult, but.if you can find a common bond with people you can make new friends that way,for example, when my son started school I made friends with other mums I met when helping out at school events or simply walking home in the same direction every night, and some of those friends i am still in contact with.Before that, my social circle had shrunk to almost nothing, as I had lost touch with all my friends from school/university/work as we no longer had anything in common, and I realised all we ever had in common really was seeing each other on a daily basis and socialising- take those two factors out of the equation and there was no basis for friendship.I am lucky to have two lovely children and a supportive husband but have spent years at home on my own all day while they have been out at school or work, and have found myself living vicariously through their lives as my illness robs me increasingly of my mobility and independence.I too am hyper-sensitive and worry what others think about me, and often feel very awkward when meeting new people, especially if they ask if I work or why I don't, seems you are defined in this society by your job.I don't know how badly you are restricted by your health but I did some voluntary work for several years when my children started school, working with people with varying degrees of physical and mental handicap took my mind off my own problems, which was good for me,and perhaps something along those lines might help you, too.I feel like I'm sounding like I think I'm the font of all knowledge and I have all the answers when really, I'm just going through life trying to cope with everything it throws at me the same as everyone else.I am just trying to think of things that have helped me at times in my life when I have been down, because we all have those times.I do think though that if you find these feelings of emptiness and loneliness don't go away and you really have no-one to unburden yourself to, then you should see your G.P again, as I do know people who have really turned their lives around with the help of the right anti-depressant.I do so hope you start to feel better soon.Take care.


I think we tend to expect quite a lot from the people around us (I.e. understanding, care, patience, empathy, etc) but the majority will feel even more scared than we are and don't really know what to say to us or do to help. So they would rather not hear about it, or just stop seeing us.

We do need people in our lives, though, we need others to make us forget we are ill for a while. If that means making an effort to get out of the house to meet them, even when we don't feel like it, that is ok, better than being on our own with the anxiety, depression, pain that this illness brings.

My life until few months ago revolved around work, I didn't have time for anything else. I thought that once I stop working I will need to find a way of making new connections, figured that the work colleagues will forget about me soon after I leave. Amazingly, that didn't happen and I still have many who want to meet for lunch/coffee even now, several months after I stopped working. I don't always find the energy to drive there or to sustain a conversation but I go nevertheless. I tend not to talk about lupus much, these people know me as strong and tireless, but that's ok too, because I keep lupus only for home and my poor husband (who gets the full hit of my suffering whether he wants it or not).

You do sound slightly depressed - the lack of interest in anything that previously gave you pleasure, the loneliness, the feelings of loss. But that's normal when you're mourning your mum and the person you used to be. My suggestion is this: don't beat yourself up about it, wait it out, it will slowly pass. Meanwhile try not to have high expectations of other people and see if you can try and socialise a bit more, even if you need to put a brave face on for an hour or so. As for you being worried about what people think about you - people nowadays have too much to worry about in their own lives to have the time to focus on you. It is harsh but it is true, you know. Everyone is so much more inward focused, so have no fear of them taking the time to judge you, that would be a bonus!


(((hugs))) I agree that it is a lonely and isolating illness. I am sorry that you are feeling this way, and for the loss of your mum. Please do talk to your gp about how you are feeling, if you find that hard maybe writing it down would help. There may be antidepressants that you haven't tried, and maybe some counselling, espescially for the grief you are feeling that would be a start. It is hard to maintain relationships and activities when you are feeling so low, hoping for better days ahead for you. xx


Dear Jacqueline, I feel for you so much. I lost my Mum nearly 3 years ago, & it made my lupus worse. To be grieving, ill & lonely is a terrible thing. Most of my pre-lupus friends had already melted away, because I couldn't go out clubbing anymore.

But recently I got in touch with my local Lupus UK support group, & now I am making lots of new friends who totally understand. I wish you were in my area! But there will be a support group somewhere near you, & hopefully not out of your traveling range.

Or, you could do like shy&smiley has, & get your own group together my messaging on here.

Good luck, & keep in touch to let us know how you get on. X


Hi, if you never had bereavement counsel after your mother died I think it will really help you. Your friend moving to Spain is a lost and you are grieving for your mom and friend and also your health, so brfore you have anti depression medication look up or ask your GP to put you in touch with a bereavement counsellor (Cruse bereavement care ) is one.


Hi everyone, i just wanted to say thankyou for all your support and good advice. I have managed to do a little socializing recently...even thoughi didn't feel very good physically. But i have known these people for a long time so they know me quite well.

I have been looking for a local lupus group but find the nearest one is Sheffield which is a bit too far for me to drive..i would like to try and set one up in this area if possible.

I'm going to talk to my GP about how i feel because i am really struggling with the death of my mum, and to make matters worse i have recently been diagnosed with atrial fibrillation...a fast irregular heart beat which is causing me to feel more stressed as my mum started having heart problems this time last year and it quickly got worse, and in the end she had heart failure. i have lupus, auto immune hepatitis, sjogrens and fibromyalgia. i also have fibrosis of the lungs and a kidney problem called renal tubular acidosis.....it all makes it hard to function.Five years ago my colon perforated and i nearly died. My colon is also damaged but surgery was out of the question because of my health and the medication i take. Even with all these problems, people think i'm ok because most of the time i look alright. Its hard not getting support. I also feel a sense of guilt that i didnt support my mum enough because of all my problems...even though she thanked me and said i'd been wonderful.

I sonetimes lose the will to live because of all the things that have happened and the things i have to cope with, though i know i wouldnt do anything about it.

An old friend from my youth has been in touch with me through facebook and she is going to come and see me. Also one of my sisters has been very supportive since ive been having heart problems. think my mum might have told her to help me as i told my mum i didnt know how i would cope without her.

I wish i could answer all your messages individually but my memory wont let me....but every single one of your messages touched my heart and brought tears to my eyes. I really appreciate your love ans support. Thankyou. i hope to get to know you all a bit better by coming on here more often. Take care of yourselves. Love and hugs xxx


My heart goes out to you Jacqueline and Sher 87. I identify so much with what you say/ Illness and best friends leaving London for abroad or leaving emotionally perhaps because of all my medical problems plus loss of a job are very hard to manage. I just struggle on really. xxx


You may also like...