Do you find it hard to maintain relat... - Fibromyalgia Acti...
Do you find it hard to maintain relationships due to living with Fibromyalgia in particular Friends ? (not virtual ones)
Mdaisy420 Voters
I have a few select friends, who know how ill I am. They respect this and we work around how I'm feeling. I don't go anywhere to make new friends. Apart from family,and these few friends I'm very isolated.
My best friend said i was exaggerating my condition and that nobody could possibly be in so much pain,needless to say we are not friends anymore.
Sounds as though she doesn’t deserve your friendship! xx
I do not go out even when I was well. I have a handicapped son so enough said. I have family and one good friend I see at my house.
I have been housebound due to fibro,crohns disease, endometriosis in that time I have lost all my friends they think I am fine because on outside we look ok but inside we we are in severe pain. But then I see them as being not true friends at all.
I'm sorry for all you're going through. I wanted to chime in because you mentioned both fibromyalgia and endometriosis. It reminded me of this: when I was in my 20s, I was in an endo support group (in the end, I had 3 surgeries - about 1 per year - and lost an ovary to endo), and I noticed that there was a high incidence of co-occurrence of "seemingly unrelated" health issues that a large number of the women with endo had along with it. I conducted a written survey of these women, asking if they experienced anything else (there was a list to choose from) and found some startling connections with other health issues and, yet, there was nothing in the literature at that time (this was in the 80s) that suggested co-occurrence. Unfortunately, I've long lost the survey and the results, but the overarching theme was that, if a woman has endometriosis, she's more than likely experiencing other painful health issues. I never suggested what issue started the domino effect but, as you know, you have to be your own advocate in your research and at the doctor's office. Because so many people and health professionals pooh-pooh us at the mention of fibromyalgia, it's hard to get the help and understanding we need.
Yes, I lost many friends because I simply wasn't up to showering, dressing, driving, making interesting conversation, etc. No one in my family ever understood the pain of fibro, and of the friends I had who also had fibro, well, you can imagine that we rarely saw each other face to face because we both cancelled get-togethers quite frequently. lol But, at least they understood. The long, cold Midwest winters were horrible. It was for this very reason that I moved south, away from the winters.
I'm sorry for the super long reply, which was mainly about me. I hate that I did that! 
I hope, at least, that you got something out of it. I guess this is the place to share, especially if there's no other place to do so.
I wish you good health and a blessed week!
Yes these diseases are very much related ,isn't till you peal back each one another one pops up !!I still have faith after 15 operations and fighting for each health condition over the 27yrs their is gradually more knowledge around our health.hope life treats you better xx
Have you ever heard a doctor or read anywhere about the connection? It seems that that might be an uphill battle, trying to get a doctor to take that seriously.
I'm still in touch with my friends, but now it's via online messengers; it's almost impossible for me to meet up with them anymore. They understand this, though.
I hardly saw a soul over winter - now it's lighter and warmer I feel a bit more like going out and have joined a crotchet group one afternoon to make get me out and have a chat with people
Were are you from a crochet group is something I would enjoy just because sometimes it’s hard making conversation with strangers but if you have something to do while meeting new people it’s not so awkward 😊
Hi Looloo i'm in cumbria and your right it's a great way to meet people. I met someone from the group at the living well with persisting pain course which has been excellent. Having an interest / hobby is a great way to drop your pain levels. While you are concentrating on not missing a stitch your pain subsides. Look on the notice boards at supermarkets to see if theres something in your area x
Yea I definitely will be looking for something like this sounds good 😊
good for you, Fibro never won that time you took your time back and achieved something, long may you win
I have lost many friends over the years & can only rely on my close family for support! ❤️ Xx
Having had Fibromyalgia (originally undiagnosed) for nearly 40 years now, I can tell you that I've lost a lot of so-called friends throughout the years through it: Their lack of understanding due to me looking and behaving so 'normally' has earned me the label of being a bit of a liar/'Drama Queen' I fear!! One of the biggest problems with a condition like Fibro - and any other 'invisible illnesses' - is that you're in a no-win situation: If you try to carry on as normal and not fuss about being ill no one believes that you have a problem but if you try to explain/go on about your illness they soon get hacked off and abandon you (even the ones who say they understand)! It's a very cruel condition in many ways but I have given up on friends now - though thank God for the internet as I have a lot of 'virtual' ones! Sadly, I do feel very lonely at times (I'm at home almost 24/7 now as I can't work - and it's been that way for the past 25+ years) - the only answer is to keep smiling and try not to let it get to you. 
I never realised how many people are isolated and lonely. Thought it was just me. But I agree just gotta keep going. This site is a real discovery for me.
Me too! I am pretty much housebound these days and, to be honest - if I allowed myself to - I could end up being really hurt over the way I've been treated by people over many, many years. Neighbours have been told of my condition and I often think it wouldn't do them any harm to just knock on the door and see how I am/if I want anything. I have done so the other way round in the past and would do so again if I was fit. But I don't want to end up being bitter about it all because that adds another layer to the illness - and goodness knows I've got enough of those!!
I just think neighbours/ friends etc don't understand how you feel as we look 'normal' from the outside!
This is absolutely true! They call it an 'invisible illness' and that is exactly right … Most people just take things at face value and have an opinion which they can't be swayed from sadly
my son ( all grown up now ) had a appointment with a specialist who after examining him said he was amazed with everything he can do as he cannot feel pain but he said " sadly he has the worst handicap known to man ", he looks normal and therefore people wont give inch of help or understanding. This is true but if we could all wear our conditions on the outside rather than the inside my God what a sight to behold we would be.
Ive not lost freinds as such but i have a lot less contact with my freinds, i do however try to arrange to meet for a cuppa when i can, or if theres a night out planned i may pop along for a bit, its hard though cos sometimes we are too tired to do anything. Im no longer at work so dont have the physical interraction with workmates, huge eye opener to who my proper freinds are when i went off sick!!
Yes, me too. I had to take ill health retirement after I took so long to recover after a back operation. I never got a card when I left after 21 years of working there. Quite amazing really! xx
I cannot arrange to go out any where as don’t know how much pain I will be in plus I now walk with a frame so most including myself don’t like to be seen so I stay in all the time and only go out to work
Yes, I can totally understand. It really shouldn’t be like that but it’s sometimes less effort to think about the options mentally & physically. xx
I have had a very difficult time of late from my best friend. She doesn’t want to hear anything about how I am anymore but expects me to listen to all her problems. We have two other friends with fibromyalgia and she seems to be very understanding with them but when it comes to me she doesn’t want to know. I have come to the point where I would rather have no friends than friends that don’t believe me and don’t want to even try understand how much pain I suffer.
Carole
The latter part of this is exactly how I feel (well, I relate to all of it of course!) Like you, I'd rather have no friends (and I honestly don't think I have now any way) than ones that just don't understand whilst expecting you to listen to the story of their wonderful lives and their every word! It's SO tough, I empathise totally XX
Snap!!!!! I have similar situation. My fibro is deemed minor by a friend who never asks how I am and bangs on constantly, even to complete strangers, about her type 2 diabetes. I sometimes have a bet with myself when we do meet up, how many minutes it'll be before "I'm a diabetic " is said.
I have a chum just like that, she walks with a stick, leans on anyone she is out with (I cannot support her weight, barely manage myself), no sooner do we get to a cafe (I drive, she moans) and order a coffee or tea than it's ''I need saccharin not sugar, I am diabetic!''. She is obese, lazy and won't adjust her diet to match her illness, relying on insulin (and proud of it). She'll start by asking how I am, when I pause for breath she bangs on about herself, we don't have a conversation - she delivers a monologue whilst I grunt occasionally. If I get a chance to interject and mention my 'aches and pains' she retaliates with how much worse off she is. She belittles me when i confess to not having done housework, suggesting that if she can manage then so should I. I point out she has a husband who does most of it for her, I live alone. She cannot see my pain, I smile, so I must be making it all up.
Ah well, at least I get out for an hour or so even though I do end up paying for the coffee!
Ditch her!
I might if I weren't her only real chum out here in Spain and because I borrow her hubby to help me with heavy or 'technical' chores very occasionally - it's a penalty I have to pay (so long as the meetings are few and far between)
Yes it's hard to convey how we are feeling when to others we look 'normal'! Perhaps if you can't beat them join them - get a stick and lean on her a few times so she gets the message!😁 xx
take a video recording of her moaning and lamenting the blues and give it to her, tell her that it is a wee prezzie a short film of a piece of her life and let her see herself as the world see's her. It would be better in the long run to join a club meet new friends and pay a handyman to help with the heavy work. What a heavy burden you are carrying, tell her straight out how you feel, you have a car so the world is your oyster get out there and live, find someone who will value you not someone who is depressing you. If this fails write out a list of how you feel about her good and bad and then weigh up why you need her and change it
This person see's the strength in you, however you are very open and I bet when she leaves ,you feel drained, I had a friend like that and I ended up telling her a few home truths and when she left it was like a dark flow of tar went out the door with her. my whole life felt better when she no longer came by, I felt sorry for her because she no longer has friends they have all left her because of her moaning. A wee hint when you meet people like her imagine you are in a eggshell full of light and nobody can touch you.
I lost both my 'best' friends when I could no longer keep up with socialising in the way they wanted to. After being friends for many years It made me realise that we were probably never as close as I thought we were. It hurts but we have to move on.
As I have been my disabled husbands carer for 25 years, I already had no friends or social life, so when I was diagnosed with ME and Fibro it was the icing on the cake of an already miserable, lonley, tedious life.
Life's so unfair at times. Thank goodness we have the Internet so at least we can all talk, even if only virtually.
I think I have lost the skill of face-to-face socialising because I spent so much time alone, working from home, using internet to keep in touch with family and the odd friend or two. I think I must come across as rude or curt because I won't tolerate idiots / rudeness / discourtesy any more, I don't have the energy to waste time ......
I’m awaiting diagnosis for Fibromyalgia but I have Migraine Associated Vertigo which has affected my balance I haven’t left the house since September that was to see the doctor I’m in constant pain every day the same as you guys plus this awful vertigo but my body stiffens up I can’t move and go into spasms including my eyes and jaw pinned shut but they don’t know what’s wrong! My so called friend takes advantage of me one of my Brothers says I’m a liar as I look fine! I speak to some people online but only have one true friend who I’ve never known for years and she’s supported me but lives miles away now but my mum is my carer and she’s my best friend xx
I’ve lost many friends due to this illness they haven’t understood it and how it has ruined my life.
SOcial life is non-existant 90% of the time. I have been out twice since Christmas.x
I find it difficult to make new friends because don't have the energy to socialise
For years I didn't know what was wrong with me so my excuses were poor when it came to cancelling plans and I think people just got fed up with me
I lost my partner of 10years. I guess he didn't really love me!
I was in 2 bands, a military band and a Glen Miller style Big Band for many years, non of whom I've seen or spoken to for at least 5 years.
I had a job that I loved and I thought the people I worked with loved me. However, no one bothers with me now despite promises that they would keep in touch, my emails go unread and unanswered.
If I didn't have 4 beautiful grandchildren, I'd have ended it all by now.
That's the start , REASONS TO LIVE 4 beautiful grandchildren that's 4 reasons already so start adding to the reasons.
I only have a few friends and don't see them very often. One of them especially is very understanding. However the more few casual acquaintances did not bat an eyelid and don't really believe me so I don't tell them anything anymore. A much older aunt is very suspicious of me and obviously thinks I am complaining about nothing. Needless to say I rarely visit her anymore.
People just don’t understand or believe me
I have only a few close friends who fortunately understand my health conditions but I have found it increasingly difficult to maintain these relationships. I count myself very lucky to have such good friends but I would most definitely admit that this condition has prevented me from forming more friendships due to my isolation x
Hi
I haven't lost any friends but have also gained friends too, they are brilliant , I know how very lucky I am. My heart goes out to all of you. Always here if you need me. Love to you all Lynne xxxx
I have my 2 best friends left from school. All others have fallen along the way-abandoned me. My Husband and I have 1 couple left who we rarely socialise with.
Even my so called best friends have not behaved all that nicely at times. Apart from people not understanding if I have to cancel. I am too exhausted and in too much pain to see people often. I cant walk so need a wheelchair out of the house.People moan about pushing me including the so called close friends which is why I dont really bother much even with them. I speak every fortnight-ish and we meet up every few months for lunch whereas I sued to see them weekly and speak to them weekly. I have nothing to say on the phone. I usually havnt been out and have no news other than-been in bed! Its veru upsetting but you get used to it. Sadly my adult daughter has M.E so we're both home, so I do have company during the day and we can have a great laugh at times
I can't believe how low my social life has dropped. I now only meet up with one friend occasionally. Other friends have dropped me, I feel, as I am so limited in what I can do.
I moved, quite a way, soon after diagnosis, so lost touch with a lot of old friends, but made some new ones, admittedly largely online through a support forum, though one or two locally through a neighbour (who had ME, but moved away a few years back), who I've stayed good friends with. Unfortunately, my best friend moved to Spain with her husband, so we largely are in touch through WhatsApp now, though it does mean I get free accommodation once or twice a year when I visit with my partner.
The best thing I did was join the local knit and natter group at our library. It's only once a month, and near home (2 minutes drive), so I can usually make it for the couple of hours, with planning. It's a great low-effort form of socialising, and, although the other people there are mostly retired, I've made good friends with many of them and really benefit from the interaction once a month. They're great for local knowledge too.
I've lost a few friends because I'm unable to keep up with them and I'm constantly cancelling things at the last moment.
I've also lost or discarded a few friends because I felt they either genuinely didn't or 'chose' not to understand my condition.
I've isolated myself alot. It's easier than constantly apologising or explaining and I'd rather be on my own even though I don't really enjoy my own company.
The relationship I find I mourn the most is my relationship with myself. Since becoming unwell, I have gradually changed and am now a 'shadow' of my former self. I don't even recognise myself or know who I am anymore. It's extremely distressing.
I understand how you feel you've lost yourself. If I look back to how I used to have endless energy, went out the whole time etc I realise how much I've lost. My solution is to do new home -based things, like learning a language online instead of at evening classes. I study on the FutureLearn website, as and when I can, when pain and fatigue allow me to.
I've lost touch with all of my former 'friends'. It's very isolating. Sending you good wishes and gentle hugs. Xx
Hi Reykua I agree. it's like a bereavement. we now have to redefine and make a new life for ourselves after we've 'greived' for our old life. I've tried to get back to old hobbies I once enjoyed now that i've been medically retired and that has sparked a new outlook for me and hope. As long as I take it easy and rest frequently I can manage to garden, knit and get out for a walk most days. The trick is to do everything in bite size chunks so you don't exhaust yourself too much. Never give up hope xx hugs
I moved house nearly 5 years ago to be nearer family & help with grandchildren. I sometimes meet up with old school friends (going back nearly 50 years) but whether I actually get to see them depends on how well I am. Going out is difficult as I usually need a wheelchair now but sitting in one position gives me cramp, so I can’t win. It’s too easy to make excuses not to go out but I do try. Generally, I find, fibromyalgia is not understood. If you try to explain, people glaze over!! 🙄 xx
Id have another dog if they wernt building on all the green space in the middle of where i live. Much more understanding .
I have made some new great friends with Fibro. Why? I go to a support group and we share together and some have become deeper friendships. I do not socialise much because of fatigue and need my bed!
Ive been suffering since 2009, so havnt beeb able to have many due to struggling with maintaining my job then recuperating.
Many many friends and some family. They just don’t get it. I can look absolutely fine during a flare up / other times I look like death during a flare up. But the times I look “okay” they see Fibro as an excuse. Shame shame shame.
No one seems to understand the amount of pain you endure everyday and how exhausted you feel. People look at you and think you are okay. You find sitting uncomfortable you try lay down and your hips your shoulders ankles Legs ache something terrible. And you are awake most of the night because you are so sore you just want to cry
I can’t say this has been a problem for me at all. I have had a better social circle in the last few years than I ever had in my youth. I will admit that in the first few years of living with impairment I had very few friends, but then I hadn’t had many beforehand either. I do not regard my impairment as a negative when it comes to making and keeping friends and relationships.
I’m so grateful for this survey. I hadn’t realised that so many other people had also experienced losing friends - I thought it was just me! I’ve lost quite a few friends over the last five years since being diagnosed. Some people just naturally fell away because I wasn’t able to do everything I could before. Some I actively ended the friendship because they thought I was “faking” or wouldn’t make allowances for my condition. Thanks so much for posting - it makes me feel more “normal”
My friend of 55 years who happens to be an intensive care sister and supports cancer patients has not spoken or contacted me since I've had Fibro. She was my world, adopted by our neighbour, I looked out for her always. 18 months ago she visited whilst passing my home, I was in so much pain and so exhausted I could not move off the sofa, I didn't know what was wrong then, it was only Jan 2018 I was diagnosed. I apologised for being this way. That was the last I saw of her... But I do have a fantastic husband. I send love and warm wishes to everyone who feels alone and so sad.
I've actually made new friends by having fybronyalgia as its something that we have in common. I've made good friends on this site. I think you like me for me...no other reason. Peck 🐤
Since leaving work due to my illness , friends just stopped calling and coming around . I Feel very sad and alone right now. Just wish that things were different.
I have actually made a few good,life long friends since being on this Web site that I wouldn't have met other wise
I sure found out who my REAL friends were...none of them...I used to be Miss popular, everyone wanted to go out partying with me because I was the life & soul, all gatherings were at my home as I had the biggest house(at the time) I had to downsize because I couldn’t keep up with my 6 bedroom house, it wasn’t just me who lost out, my kids lost the home that they were all brought up in..my husband walked out too, couldn’t cope with the change in me...for better or for worse didn’t matter to him!!
It takes so much out of me to work partime that I have nothing left. Arrangements can be cancelled on the day because there is no predicting when I might be really bad. One friend has stood by me throughout but my then husband of 21 years whom I had been with since aged 16 thought he might have to be my carer in the future and filed for divorce. It's an misunderstood life altering condition
morning Mdaisy, sometimes i feel my family avoid me because they don't understand.I feel so alone a lot of the time.
Only one person has stuck by me through the ups and downs. We are very alike so thats probably why she understands when I have to let her down on many occasions. She knows when I'm bad as I retreat from society and stop communications but she will turn up at my door to make sure I'm ok.
I had three friends - my best friend who I had known for 25 years - I had to cut ties with her because she turned into an emotional vampire - everything had to revolve around her and when I got fibro 13 years ago she just didn't care or want to know; so about 5 years ago I broke off all contact which was incredibly hard My second friend died one night at the age of 48 unexpectedly - he had mixed viagra with two other drugs which gave him a massive heart attack - he was very supportive and I miss him very much. My third friend is a nurse so understands fibro but she has a very social life (likes to drink, go for meals, party, etc) plus I don't care for her very selfish husband - so we hardly see each other. Life really really sucks with this condition - yay!!!!!
I clicked "other" I've never really been a sociable person, only really stuck to one friend at a time, it's not my FM that has caused this though, it's my mental health problems that I've had for many years now.
It doesn't really bother me too much to be honest. I have my Son and Mum, plus my pets, I'm fine with that
I also clicked other. If people are interested in more detail and advice I wrote a response post on this (locked to the community).
Similarly, other issues alongside Fibro have caused difficulties with socialising for me. But this is something I'm learning to manage.
Xx
Never had friends
I used to be very sociable,, and still I would love company,, to see old friends but I cannot manage the interactions, with most,, somehow they think life is the same for me as it is for them and I just can't do it.
While online chat is at least a form of social interaction as and when I can cope with it,, it is not a freind. It seems imposible for most to grasp the extent that fibro wecks lives and much of that is due to lack of understanding the limitations that come with the disorder. You have to become very protective to cope and self isolation, it's the only way that I know off that works for me.
