THE LONELINESS OF LUPUS

I'm fed up with friends and acquaintances taking one glance at me and coming out with the phrase "You look well, how are you feeling?" So I bite my tongue and say "Fine thank you" when I've just come out of the loo being sick, feet hurt like hell and seem to belong to someone else, can't quite see in focus, neck won't operate beyond fifteen degree turn in either direction, hands hurt like hell and I still feel sick!!

So I smile sweetly, acknowledge their concern and hold the anger inside that they cannot see what I feel. I know even at the time that I am being unjust in my feelings. That knowledge doesn't help one little bit!! I feel angry and lonely, the only release I have is to vent my feelings here, so thank you for reading this, hope you don't feel the same and that you have family and friend support so that you don't feel as lonely as me.

42 Replies

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  • So sorry to hear that, and I know where you're coming from.

    I decided long ago that (in general) when people ask how I am, they don't really want to hear my honest answer. 'Fine, thanks' is so much simpler.

    Is there a local support group that you can attend? Lupus uk do have support groups, and failing that there are telephone contacts. I attend a local support group, and through that have built up good friendships with fellow lupies, and if is with them that I can share my true feelings and know that they understand what I'm saying!!

  • Lupylass,

    You're quite right, "Fine thanks" is the right answer. Insofar as support groups are concerned, I live in the middle of nowhere, the nearest support group is perhaps 100mile return drive and I cannot be off site too long of an evening having a boarding kennel and cattery to supervise. What are the telephone contacts you mention, not come across these before? Sorry about the rant, just so oo fed up lately, but thanks for the help and the concern.

  • 100 mile trip isn't easy!

    Sarah Heney has answered your question I see, thanks Sarah! Just to clarify. Lupus UK have a list of telephone contacts who are happy to chat by phone. Get in touch with the Lupus UK head office and they can explain further. When I was first diagnosed with lupus I immediately joined their charity (only £10 per year). It's great as you get a quarterly magazine, can contact people etc. It made me feel a part of something and less isolated.

    This forum does a similar job too, but the ability to chat to someone by phone or face to face helped me.

  • Thanks Lupylass, I shall do exactly that!

  • KathinAyrshire

    If it's any consolation you're not alone.....

    I fully understand where you're coming from. My circle of so called friends has diminished down to one really good friend who understands how the wolf affects me. Lupylass is right too , keep the answer simple no-one, unless they are a fellow sufferer, understands the extent of Lupus.

    I do most of my suffering alone, deserving an oscar when parents visit...they are of an age where I don't want to worry them.... although I do have a car, most of the time I don't feel safe to drive it, and I'm beginning to get anxious when I have to drive...it doesn't take a lot to start a panic attack.! I try and keep positive and fill my days, often even though I've dragged myself around to do things, I can't remember what I've done....it might have taken hours to do something...I no longer work as I was deemed incompitent to do my job...takes any self confidence and esteem away from you...but I do try and keep a sense of humour.

    I talk to myself constantly..chastising myself when I drop or knock anything over...if anyone heard I'd be sectioned!! The latest is losing my mobile....i searched for two hours...put it in the fridge instead of the milk which was still on the worktop! You have to keep the capacity to laugh...even if it ends in tears....better out than in.

    Good luck and try to smile though I know it's hard. Lots of gentle hugs xxxxx

  • Lizzidrippin

    Bless you I thought it was just me! Mobiles don't work here but have a cordless house line, couldn't find it the other day, searched high and low, went to the other unit and rang the base unit, took a quarter of an hour or so, but finally tracked down the ring tone, in the freezer!! I had been to the freezer to take out my dinner whilst answering a call, you can guess the rest!

    I kid myself I'm talking to my dogs, but it's me I'm giving the pep-talk to, as like you I try to keep going, but what happened to the high energy, always on the move, frightened of nothing me?? I've lost the capacity to laugh, what is the texter speak, lol, always thought this meant lots of love not laugh out loud, the latter would be a treat at the moment. I'm a drag I know, just can't snap out of it at the moment.

    When you say your parents are of an age when you don't want to worry them, do they not understand or are you very adept at covering up how you feel?

    Thank you so very much for taking time to give me your support, it really is sincerely appreciated and lots of hugs back at ya! Smile kiddo.

  • Hi I know what you mean. I can sit at my kitchen table all day. There I can do my nails, pluck my eyebrows, put my make up on, taking time and consideration to get it looking nice, straighten my hair and all because the pain is too great to get up and walk.so I will look nice and will look well and thats all people see.

    Take care know exactly how you are feeling. ....xxxxx

  • Uzi....totally understand this. I take more time with make up now because if I look ok then this is the one thing I can do on a bad day. I totally relate....By the time I get out with hair made up even if I only wash and blow dry it twice a week to pace myself and put some make up on we look fine. It's just what we all live with.

  • Xxxxx

  • Dear Uzi, I know how hard it is to try to look good, I've given up on that front and I think you are really brilliant to achieve it, the last few days here have been taken up coping with no electricity and a temperamental generator, so I greet the customers and smile and try to cover up the pain and walk upright. There I go moaning again, sorry! Have a lovely Christmas and New Year, I hope you feel well.

  • Hi, you are right...it is a lonely illness because it is so invisible to others. I think we have to spend our time wisely and that means when we spend time with people it is better if they do understand (as much as is possible). I have learnt that with other people who don't see the before struggles that we have (difficulty in the mornings, aches, fatigue, pacing) it is better just to just say 'fine' too in response to how are you. If we are to manage that means rest, relaxation, pacing and that doesn't fit easily with friends that might want to go shopping, go for a walk, meet up in a large town etc. Life has to change for us and unfortunately this often means limiting seeing a friend to once a week, meeting up in a coffee shop, ensuring that you can drive to see someone rather than walking around a town, avoiding shops with flourescent lighting, having friends that don;t mind if you have to cancel because lupus is unpredictable on a daily/hourly basis. It's lonely too because we have to keep up a pretence as we can so often feel we are just moaning if we say how we feel. Yes..... the right meds can help but our time has to be managed so well and we have to sift out friends/balance our life so our social life often becomes diminished. You are right..... it s a lonely condition and thank god for this site and to Lupus UK for providing us with up to date information and to talk to people who understand fully. To balance this out though......we do get to spend time with those that matter and despite it all like the film.....it still is a wonderful life xxx

  • You are so right, despite it all its still a wonderful life. X

  • Many thanks Mstr I agree with all you have said, just one question, How does one get a head around the resting bit, this is what I feel most frustrated about, always having been someone on the go all the time, I cannot just sit without feeling guilty that there is something I should be doing? Any good ideas on that? Have a good painfree Christmas.

  • I nw what your going through, because I get excacally the same thing everyday. "Hw u feeling, you look fine" and the only way to simplifie it is by saying fine thanks.

    I get really bad days like 2day feel depressed and just wona cry, miss my family to, but no one really understand what we're going through, I have people saying to me we have diebeties and we're coping ad we're doing ok everything has to be compared, makes you feel even worse. I think I'm losing my mind, I was on my mobile phone 2day and 2mints later I was looking for, but the weird thing Is that I was on the mobile phone so hw cud it be possible to look for it wiles I was on it. That confused me. oh well

    Keep urs heAds high

  • Dear Mainshah it sounds like brain fog that you are experiencing, hope things are better for you today, being of an elderly disposition I can put this down to old age and smile! Hope today is better.

  • I agree with most of you except one thing. I never was a ' girly type',but I did take care of myself to look my best. This disease has taken all of that away. I am 51 years old and have wrinkles on my face that I did not expect to see for some years. I believe it is from the almost permanent grimace of pain showing on my face. I know all the meds have taken their toll but the deep lines around my mouth tell a story of their own. I cannot wear mascara anymore because of irritation to eyes.( I have tried tinting). My hair is no longer the same through thinning, and my teeth are crumbling away! Add to that the huge bust due to steroids, and my complete loss of skin toning, I just don't bother anymore with my looks. I have a lumpy walk and bones that seem to hang awkwardly by theirselves. Before you all shout out" depression", I have not lost my personality. I am still here beneath this crabby body and I'm not going down without a fight. The party season is here and I will( if well), turn up in baggy clothes, not too tight sensible underwear and my 'lovely orthotic boots.' I cannot dance the night away, but I will have a good, sociable time. I believe that my friends and family are more interested in my sense of humour than my appearance. I won't be talking lupus, I will be enjoying their news instead. My life doesn't change much so to get out and be part of their lives is lovely. All loved ones mean well but as is common answer from everyone, I too, tell them I'm fine.

  • Brilliant, I am much older but agree about wrinkles, hair, teeth oh... every word. Don't fall into the trap that I have though, that of being a listener and not contributing to conversations. I find now I like to listen assuming that what I say (non Lupus) will be boring for them. I am sure though that your sense of humour will not allow this to happen. Enjoy Christmas.

  • If you become a member of Lupus Uk who run this site, they have trained "contacts" all over the uk who are volunteers, with lupus, who are hsppy to chat with other sufferers on the phone. A brilliant idea xx

  • The loneliness of lupus is the hardest thing. This forum offers some sanctuary but I too have found it very hard to remain chirpy at work and with family. I think that people with any form of chronic disease need compassionate people to 'share' their experience and 'walk with them' along what is an uncertain and at times a frightening path, unfortunately our friends and family are not equipped to do this, which is obviously not their fault. Using the volunteers at Lupus UK sounds like a good idea SarahHeney.

  • Hi had my experience of this and then tried to bring humour into it, when they ask if I sometimes reply "crying on the inside" it's funny seeing their confused reaction as they stumble to think what to say next lol. At work I have a flip calendar called the daily mood and if people ask I would point to it "mischievous" "subversive" etc I find I ended up not having to say anything people would just read it :-)

  • Sounds a brilliant idea the calendar, must get me one asap. Many thanks

  • Hugs and spoons xxx :)

  • Hi just want to say, that NO you really are not alone or crazy to feel like that!!!! I am sure all of us feel like that some days-I am on an up at the mo, as just on a course of steroids, and they soooo lift not only my mood but my motivation!! And it is so nice not to be in constant pain as I was a couple of weeks ago, BUT......I am well aware that I will go back to where you are now, because that is the nature of the illness, and the steroids are only masking that. I know I am lucky, I do have one good friend nearby who suffers from constant pain (not Lupus-to do with her bladder) and I can ring her and vica versa her me, when we are really suffering, because our illnesses are invisible, people that have never been through it will NEVER understand...if I am honest, before I got ill I was exactly the same myself-I am a lot more empathetic now...if I see someone with a long face whilst out, I do think to myself - don't judge - they could be in pain. So I suppose you could say that Lupus has made me a better person!!!! Big hugs to you :-)xxx

  • Bam, thanks for the comments and the hugs!! Most gratefully received.

  • Hi, I think looking well is a Lupus thing as even my GP and consultant always say "you look so well no one would believe how ill you are" I always try to look good and I am not looking for sympathy from no one. Some of my friends in the past think they were helping by suggesting the things I could be doing (as if I wanted to sit around doing nothing).

    Now of course I use ambulatory oxygen so no one comment anymore about how I look it's "your not feeling good today", "you poor thing" are you alright? but I smile as most of the time I can't talk anyway.

    I do get stared at when I park in a disabled space until they see me getting the oxygen, then they look away quickly.

    Sorry but I am also ranting didn't think that it has affected me, but obviously it did.

    Know that you are blessed everyone, no matter the circumstance.

    Lots of love and hugs xxx

  • Dear Maureenpearl, I am so sorry that you have to be on oxygen, my late husband was also, so I realise what this means to you and you have my utmost sympathy though I know you are not looking for it. I hope you are having a better day today, and lots of hugs back at ya!

  • Hi Kathin,

    I quite agree with you people dont understand what lupus feels like friends of mine say you look so well when my head feels like its been swapped for someoneelses ,Ive just been sick and everywhere hurts like mad thats when I bit my tongue and then swear because Ive bitten my tongue but I do live in a house with people who say shouldnt you be resting or are you sure you should be doing that drives one mad who said convent life was peacefull , those who say to me it must be lovely being a nun so quiete nothing to do but pray all day OH YES WHO COOKS THE MEALS THEN WHO DOES THE CLEANING AND WASHING WHO CARES FOR THE OLDIES IT DONT DO ITS SELF but the life is great fun lots of laughter and care for each other.

    We will keep you in our thoughts because we understand what its like as I said the lupus website is here for you and the support we give each other is what holds when the chips are down.

    God bless Wood

  • Dear Wood, Apart from the problems I am so very glad that the day for you is sometimes great fun and lots of laughter, I am so envious. Though to be truthful if I search, my days have their highlights too for which I am so grateful.

    You are so right that the support we give and receive on this site is without measure and I thank you so much for that.

    I hope Christmas is good for you. Love and hugs

  • I know for a fact that you only know what it is like until you have it. I have seen my Mother live with Lupus all my life and I thought I knew but boy I did not.

    My wife just does not understand. I have always done the bulk of housework and cooking and when I don't get it done she still rants at me. I had cleaners coming and she made me get rid of them because she has OCD and doesn't like people in the house (but that's another story).

    I run my own consultancy and am working 3 days a week but have to pretend all is ok and out a brave face on as if they knew I was as bad as I was at times they might not engage me further. I hide it by resting on the days I'm not working but then I can't get the housework done - vicious circle.

    I spend a lot of my time at home alone and I do have my mum but she is 400 Miles away so I know how isolated you can feel. Luckily one of the mothers of my daughters school friend has Lupus and I just found out so I now have someone local who I know to talk to if I need it.

    Lupie hugs....

  • Dear DonnyJM, your life seems even more complicated than mine, I only have staff and customers that I feel need a 'brave face', but I am sure in your place the cleaners would be back tomorrow! Like me you spend a lot of time alone, but how about Skype with Mum? It would be worth a 'tablet' for Christmas maybe? Hope you manage to build a relationship with the mother of you daughters school friend successfully. Have a good Christmas if you can and I return the hugs.

  • I know how you feel,I was diagnosed over 20 years ago,and the reaction from people is still the same,they ask how you are,but are really not interested.The only support is from people that have the condition or understand it.Surround yourself with people that understand the condition,this web site is great for support,also I hope you have a good GP to talk to.Keep your chin up x

  • Mary, I feel so awful, you've had 20 years of this, how on earth do you cope? I've only had two plus years and it's getting me down. I'll keep my chin p and do thankfully have a good gp. Hugs to you.

  • ANY illness is lonely - no one but yourself know how you feel. Even if everyone here identifies with what you're going through, you are still the one that has to go through it.

  • You are so right, but the support from here really does help so much.

  • I am finding this site so helpful and comforting. I was diagnosed with DLE in November, although with hindsight I think I've had it for about four years. I do however have some DLE symptoms including extreme fatigue. I am already fed up of explaining the condition and my symptoms to family, friends and work colleagues. They all say, I would never have know you were ill. And even when I show them my scars from my rashes and my lupus butterfly rash (hidden by make-up) and my bald patches on my head, they say oh I can't see anything. Luckily I have a great husband and three young children who give me a reason to get out of bed and keep going. I have joined Lupus UK and am finding this site very helpful. Wishing you all a happy Christmas!

  • Wendy, thank you, I know now I am not alone, it is so difficult for people to appreciate that we are so ill on a cellular level. Bless your husband and children for their support. Keep going and smiling as you do. Have a lovely Christmas and New Year.

  • I am sorry there here every ones been through so much. I was diagnosed in 2008. People did not understand but I joined lupus uk and was helpful. Now it is under control, but I do have days where lots of aches and pains and I just sit down and read a book. I can't go out in the sun or go near people with colds. When people ask you look fine. I just say I am ok now. So I know how you feel. Just keep yourself occupied in things you enjoy doing such as painting, reading etc... Plus phone close friends once a week that helps. Hugs xxx

  • Puneel, I am so glad things are under control for you most of the time now. I try to keep occupied most of the time but the energy levels over the last six months have been so low it takes me all the time to get out of the chair, yet I look 'alright'. This is what I find most frustrating! May the good control you have at the moment continue for a very long time. Have a lovely Christmas and New Year. Hugs back to you.

  • The first couple of years after I was diagnosed was difficult,looking back I struggled to accept I had Lupus etc,I fought against it and made myself ill ,by pushing myself and not resting,until I got support from lupus uk group in Edinburgh,were I was living at the time,I had no family support and a small baby and husband working,the best advise I got, was to go with the illness ,if your tired rest etc,and go to some of the conferences and don;t waste time on negative people.I only wish I lived near to have a chat,because I know how you feel,do take care it does improve ! xx

  • Dear Mary, 'fought against it' is I realise now is what I am doing, it is difficult to accept and I do hope it gets better as you say. Many thanks for taking the time and offering you support. Have a lovely festive season and here's a hug for you xxx

  • I know exactly what you mean just like everybody else on here who knows exactly how you feel, I decided that I was not going to be quite so blunt as to tell people that they needed their eyes tested but honesty was the best policy when I was feeling like death warmed up and people were telling me how well I looked. I started coming out with things like really? Well I will look really radiant on a good day! I introduced a lot of people to the Spoons Theory, I got a few raised eyebrows when I first mentioned it - explained that it is not as it sounds but actually an extremely good way to describe living with chronic illness, I said that although I didn't want their sympathy all the time and didn't want wrapping in cotton wool embarrassment covered up by empty comments like you look well are meaningless, I even got some leaflets from LupusUK and we all held a Charity fun day earlier this year raising awareness in the area. Some thought I was a bit blunt and rude but it opened my eyes to who my true friends were.

    Good luck and happy Christmas

    Madmagz x

  • Dear Madmagz,

    Where on earth did you find the energy to run a fun day?? I do so admire your accomplishment. Being blunt is an idea, perhaps I play down too much just how dreadful I feel, so I shall try being more truthful.

    Have a lovely Christmas and New Year.

    Many thanks for the help.

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