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Behçet's UK
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Has anyone lost friends ??

Hi , has anyone found that they lost friends , I have seemed to have lost a number of What I thought was good friends over the last year due to being sick and having times I can't meet up,, I found my self with no one to meet up for a coffee with , it's become lonely with no friends and I keep asking myself what I did or didn't do :(

17 Replies


no it is not you i have had the same thing happen to me ...why !

they no longer know what to say or do around us any more ..stressed they will say ,touch or do the wrong thing

they know it is a cop out but for most that is the only way they can get round it

how to get them back takes work and if that dose not work .. they could not have been a real friend to start with

but you do have all of us in hear who love you and you never know some may even live close to you so you can start your coffee mornings all over agane with love

start living not hiding

lady :)


The first year I was very ill a lot of friends dropped away. Some of them were workmates, and when I had to leave work, we had nothing in common any more. I saw one of them last week at the swimming pool. I know she saw me too, but she avoided me. I was really hurt and wondered why she disliked me so much, when we had been quite close a few years ago. Then I realised she must have felt guilty, as she was one of the ones who promised to come round and visit when I was too ill to go out, but she never did.

Other friends I don't see as they are working during the day and I don't go out in the evenings much nowadays. I keep up with them on Facebook, but that's about it.

So I was down to a couple of old friends, then one sadly died and the other moved to Africa. It was a lonely time but thankfully I have big family. Once I was well enough I started art classes, and now have a bunch of fabulous new arty friends, who accept the illness as part of who I am.

I hope things pick up for you soon.


I've had the same I saw a friend in a shop and she couldn't run fast enough away .. I've noticed that my so called friends have now even taken me off Facebook :(


Hi Sam

I agree with the above - people feel guilty. Sadly I had another reason - I used to have a business and give a lot of 'freebies' to friends. When that dried up so did a lot of friends.

The few that I am left with are what I would call true friends. Also, with this illness you are in a different phase of your life with new 'interests' so you will be making new friends here on this site.



PS I'm too old for Facebook but if they have taken you off I don't think you would want to call them friends.


Sigh. Fair weather friends. Well, at least you know how shallow they are now and won't have to waste your precious time with them any more. Do you know of any Behçet's groups in your area? I haven't been to any yet, but would really like to meet up with some others in the same boat one day.


Yes I was a friend when I could babysit or drive on nights out or let them have free hoildays to Spain but since I've done less im pushed away .. No group where Iam but I'm trying to set one up , thanks everyone it's such a Lonley time at the moment , fingers crossed I can make some true friends soon


Hi, I agree with what everyone has been saying, same happened to me. what area do you live sam?


I don't do Facebook as I think it is a lot about one upmanshipship and "oooo look at me"

My story is a lot like Jaxii, as I've gradually eased out of the workplace and just agreed I can no longer work I have nothing in common with most of my my friends from work.

I have made some brilliant virtual friends on this site and managed to meet up with some in person at the national Behcet conference.

I aim to meet Andreafm this year for a real coffee and I am still determined to meet Lesley when I go to Australia,......( I will email you seperately Lesley I have loads to tell you.)

Like Jaxii said as you start new activities you meet people who don't know you any other way and that is so much easier than wishing for what can no longer be.

I also met a lovely lady when I went to the COE at Birmingham and we try and meet up when we can.

I have lots of time now so private message me when you next go and I will meet you for coffee.


I think this will be such a common experience for many of us. Over the years I've had to let go of many friendships because I just didn't have the energy to keep up with them, or do what they expected of me. I also work from home, so don't have the ready-made camaraderie and social contact an office would provide. However, the friends I have I value very much indeed, and they are the ones who accept me as I am. I now think of it as quality over quantity!


Another friend-loser here. I had to retire from my job about eight years ago now and what a lonely eight years they have been. As others have said, workmates fell away, although that process had already started before I retired. People stopped calling at the house and if it hadn't have been for Facebook I'm not sure how I would have survived. I have various groups of friends on there from my obsessions across the years. There are my tarot friends, my silver Smith friends, knitting friends, quilting friends... you get the picture. Because we have something other than work in common, these friendships have remained strong, if virtual. And, despite being virtual, some of these people are the best friends I have ever had. So, whilst I remain lonely for physical friendships - hugs when things aren't going so well, a touch on the arm that says, it's okay, I've got your back - I now can find someone to talk to at any time of the day or night. As a raging insomniac, this is an important consideration!

So, yes the old friends buttered off but they were replaced with true friends. Oh yes, the added bonus is that I can unplug these new friends when I'm feeling antisocial (or when they're talking bollocks)


I'm in Bristol , thank you all so much I was starting to think it was just me and I had done something wrong , anyone want a coffee sometime or a chat I'm available :)


Hi Sam

I am in Chippenham so not that far away!





U know what samething happen to me but then u know they not really true friends.in time thing will get better .good luck.


I can empathise with all the above. As soon as you become less useful to some people who you thought of as friends, it is surprising how their friendships seem to melt away.

Your real friends will not mind you rabbiting on about how you feel and what drugs are making you feel worse/better. They will always care enough to find out where you are when they miss you at work, WI, church, or what ever.

Most of us have found real friendship on this site. Everyone knows the problems we all have with BD, some of us are extremely ill with it and others not quite so, but there is always a camaraderie which often is missing out there in the cruel world.

I am sure there is a BD group in Bristol. They will show you the sort of friendship which is so valuable as these people are in the same boat as you.

A long time ago I was feeling perplexed and hurt just like you. I live a long way from you (in Hertfordshire), but if I could I would drop in and give you a big hug. Sounds like you are due for one. xx


I've had this as i can't particularly drink anymore and get tired very quickly or if my skin is bad they can't hide there disgust. My baby was born a year ago so I have to go out an thank god I've found two friends who seem to get it, and they are godsend.

If your near London I'd love a coffee and a gossip xx


OMG I have also. When I have explained to 'the so called friends' in the past about my illness & how I have lost friends & family they have all said 'well the are not true' but they have done the exact same thing & dump me when I have had to cancel arrangements at the last minute because of pain & feeling poorly etc. They say at the beginning that they understand, but they don't. This is why I hate this illness so much because if you had something physical to show people would know that there is something wrong, but in a lot of cases its a hidden illness! There is one person who lives near us & actually said to my husband "I couldn't do what you do, I don't know how you do it" (this person is married & has children). That really hurt as you can imagine, not only because of what was said but this person & their family had been welcomed into our home. They all say the same thing "But you look so well" So I now try & not get into to many new friendships & my family is a total let down apart from my fantastic husband & little boy. They are all I need & I don't know where I would be without them.


I found that initially you get a lot of sympathy/pity from friends, which at least shows they care even if it is awkward, but as time drags on and your condition hasn't 'gone away' people struggle to know how to handle the situation. Some want to gloss over it like it isnt there, other insensitive people even make the odd joke about it. Inevitably perhaps after turning down a number of invites on grounds of fatigue (and alcohol intolerance) the invites stop coming. I was hurt when a good friend of mine didn't even think to ask me to join his stag weekend - by then he probably just assumed I would say no anyway.

When my condition was "up" in the early days, I couldn't even drink one of those tiny cans of weak beer without getting a massive headache in less than 10 minutes.

People are people I guess (a lot of superficiality). True friendship (that supports you reliably in bad circumstances) is rare in comparison to the wider group we call friends. Some people just don't want to deal with anything difficult. I wouldn't ex-communicate the shallow ones.....just don't look to them for support once you know what type they are.


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