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LUPUS UK
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Am I the only one to feel lonely?

I am new to this site, I was diagnosed with SLE in January, and was wondering if anyone else felt lonely to start with, my husband is great but people I thought were friends don't want to know anymore.

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Hi Floss, Well those people are not worth having as friends, you will find out who your true friends are as they will try and understand what you have.

I was diagnosed last June, and yes I felt very isolated and alone, my family were good and very supportive, but I did alot of reeding on varoious sites an djust kept telling all i had read,

I only joined this site about 2 months again, and from then on I have felt better and not nearly so alone I think its just knowing that other people have been and are going through the same feelings,

Just remember on this site we are all like minded and all understand, so dont feel lonely

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Thank you x

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Hi, I'm the same too. I was diagnosed October and like most people I didn't really know anything about Lupus so found it hard when it came to explaining to others I did tend to say things were fine when perhaps they weren't. Those who are genuine friends are the ones who will help you when you need it. Again like you both I'm new to this site but have found it a great help. Not only have I found out there is a local support group but just by reading what other people have written/ experienced it has made me feel that I'm not alone, not stupid, I do have an illness and others know what it's like.

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That sounds a lot like me, hope your having a good day x

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Hi , me too .Was diagnosed with fibromyalgia over a yr ago and more recently in the middle of a Lupus diagnosis .

I've lost friends , felt silenced from saying how i really feel with some , and do feel lonely and hurt sometimes . Some people dont get it and i have found that very hard to deal with but have no choice but to accept it .

On a positive note, i have found this site invaluable, non judgementle , and it is always there when i need it, i'm sure you will find this too xxx

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Thank you I'm starting to find that about this site too x

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Hi there,it is sad when people can be so cruel,my daughters problem is opposite from yours,her friends and her staff at work are great,they think more of her than her partner of 8 years,he is lazy and sulks that he has to do things,not for her but for his children and the home.my daughter works full time sometimes 50 plus hours a week in management,has twin 3 year olds ,she has sle,heart disease and possible multi system vasculitis,and lots of spine disease.Her partner works as well but my daughter is the main earnet so she has to work,she has no choice,she is still not well controlled so is constantley feeling ill,all he needs to do is share the house duties,if he got on with it instead of sulking about doing things for my daughter ,her life would be so much easier,she runs herself ragged,he sulking today she constantley has to ask him to do things,its a good job she doesn't need him to look after her ,her staff at work do so much more for her than he will ever do.Selfish! It's great that your hubby is so good,shame about the sad friends.

It is beyond me why people can be so cruel,shame on them.

Take care, Sandy.

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Thank you

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If you would like if you give me your area you live i could give you the name of someone in your area.

I belong to Lupus U/K and urge people to belong (£10) to this charity you will get New & Views & New & from your local are a News letter and you will get to make friends like your self and the support from Lupus U/K is second to None.

As Lupus is a very lonely and having sites like this & Lupus U/K gives me strength to carry on

Love & Sunshine

Jan XX

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I live in the Maidstone area, I have joined lupus uk, I did that Thursday, I am also meeting someone Monday that Paul put me in touch with.

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Yes,I too feel very lonely & isolated...i have lost so called friends along the way & it can be very hard to describe how you're feeling all the time.

I also recently moved to the Bromley area & apart from my partner,I know nobody.This makes the days long & often depressing...im glad I discovered this site.I sincerely wish everybody feeling like this strenghth & hope xx

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Glad I'm not alone

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am i right in thinking its in Kent

If so there are Lupus contacts in your area who would be pleased in getting to know you.and we are always here for you xx

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Yes janiceray,it is Kent im on the borders of Bromley & South East London...i joined lupus UK yesterday & look forward to meeting people in my area & continuing to talk to you all here.

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Good for you and i am so glad you Joined

So a big welcome to you

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I to feel very isolated & lonley as not many people understand & can be ignorant.I was diagnoised almost 15yrs ago.The support meetings are too far for me to attend which is a downside but join lupus uk & this site is a great help as u know ur not alone.

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That's true makes a big difference to know your not the only one.

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Hi

When you tell people ( friends) that you have lupus, first they look at you, well you look well, so you try to explane and you see a dazed look come over there face, not really interested. I think because we don't have a great big boil that the size of a melon on our faces or we don't have plasterd armes and legs, that we look well you get the feeling they don't want to know, I don't talk to my friends or family about lupus anymore unless they ask and then I keep it brief. I can talk to my Husband and my Kids and also there is this site, which is brillant. Keep well ;)

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Thanks that's good advice I have my husband and my mum and brother my dad isn't someone you can talk to about things like this don't get me wrong his great hopefully I will be able to talk to my daughter about it when she is older but that is a fair few years away she is only 4

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I carry the little book marks with me and Just hand them to them

A nice top I seen said

Lupus

Google it!!

I said it all

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Hello Floss82 - I am in the middle of tests but nothing conclusive yet just "connective tissue disease" so far. I think I do have Lupus though and find that friends are OK but several people at work act as if I'm a drama queen when I say I'm so tired etc. I do feel isolated but reading things on here really helps.

Stay brave xx

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I will try and you keep your chin up too stay well x

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Hi Floss - pleased to know you are finding sympathetic friends on this site..... it has been a great help to me, as I live "out in the sticks" and do not drive.

Have you sent off for the DVD yet? This is a great for answering questions you or your family may have.

When you google Lupus, it can be overwhelming - as there are so many ways this illness can manifest itself - and it is all too easy to let all the possibilities depress you! If you have a good Consultant and/or GP, then you will eventually reach a way of managing the symptoms, even though there isn't a complete cure at present.

It does tend to sort out the genuine friends from those-not-worth-having! You may find it helpful to read the answers I received about how it affects those who love us...... (Just click on my icon)

Cheers for now....

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Thanks will do that x

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Hi Floss

I was diagnosed 8 years ago, the friends you lose are fair weather friends, the friends who stay with you and take the time to understand are life long friends. I have a limited amount of energy to invest in friendships (only a few spoons!) I want to ensure I am investing this precious enegry and time wisely, therefore the "friends" who have dropped out of sight have done me a favour! I have a small circle of very dear and understanding friends who I would do anything for. I find this site moving and heartening and it has helped me in times of depression and lonliness.

Davina

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I know how you feel,x

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O my God!! I have had this for 4 years and I have said it from then this is a very lonely illness!! No one really know about systemic Lupus and You are right know one whats to be around you!! I have lots everything from my job to my friends to my family. I am glad you wrote that because it is very sad. you can call me 314-374-4311 My name is Kristine I am 48 years old. Hang in there

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Thanks for your number are you out of the uk?

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Yes, I am in the USA. we dont even have anything on TV about Lupus! my E-mail is kzander1234@hotmail.com I really like this site. I did not know it was the uk. But I am right there with you! I was crying this morning about being lonely! thank god for my Husband! and I get lupus brain fog and I feel very stupid and my kids are great but they are 27 and 28. And I feel that they are embarresed of me. I dont blame them at all. My life has done a 360. But what really hurts is the friends and family that I have lost. I am very thankful for this site because right now you and I feel the very same way too bad we dont live by each other but we can write our talk.at least you know no one will turn there back on you on this site because we our all in the same boat!! sending you hugs and blessings!!!!! love, Kristine

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Thankfully I don't feel isolated, lonely - not really as I do enjoy my own company and hobbies. However, I have always had a great, small suportive family and only a couple of close friends. Maybe because I can be quite a private person!

I still work and i would say the majority of my colleagues are supportive and sincere apart from a couple, who are not worth bothering with or worthy of my time lol!

The only person who can stop yourself from feeling isolated is you - join clubs, get hobbies or get out and about if you can. I strongly believe in POSITIVE MENTAL ATTITUDE - yes this chronic condition can stop or sometimes prevent you from doing some of the things you would like. But, there are things that you can do to try and improve your quality of life.

I love gardening, can't do it when the sun is out - so potter around late evening, i love reading, art etc. You have got to make something out of life and say that you have Lupus - Lupus doesn't have you!

Hope you find this site really supportive!

Lulabelle x

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hi. i get that reaction when i mention i feel tired or i have a headache.

feels like alone alot. family not much help.my mum has the kids for me but she stresses me out a lot.

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My mother in law stresses me lol

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When I got sick (before diagnosis) I was still trying to do the things i always did and just made myself more ill. Then after diagnosis and for the next year or couple i tried to understand how the illness was changing my life and how I had to change in order to live.

"friends" def fell by the way-side (in droves as I'd been very very sociable before), because now i hardly went out -- i could hardly keep up with a basic social calendar.

finally i resigned myself to my new life -- at a much slower pace. by definition it meant not keeping up as i did before and it resulted in being lonely.

If you keep saying no to invitations, then eventually (I learned) the invitations will stop coming!

Well so what -- I have entered a new stage in my life and it's not like before and i guess i'm ok with that. i have to be.

but yes, i feel lonely. it is a lonely disease.

thank goodness for sites like this and all of you and me!!

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I also feel isolated often because I have difficulty leading any kind of social life with my other problems. I find it hard to be in noisy environments and hard to deal with unpredictable situations. I am teetotal and don't like to go out in the evenings. The only family member I see is my mother about once a month, who does not understand my condition and is in denial about it.

My main social life revolves around my buddhist meditation group and a local community project I am involved in. I spend the weekends with my friend who understands me or I sometimes go on a meditation retreat with my buddhist church. Also I have a lady who comes to help me in the kitchen once a week, which I enjoy.

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