Do You Feel Your Support Network (Family & Friends) Has Changed Due To The Possible Stigma Relating To Diagnosis Of Fibromyalgia?

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  • Hi my friends

    I sincerely hope that everyone is feeling as well as they possibly can be today?

    I have personally lost touch with a great number of friends, (some by my choice) but I do have a wonderful network of help through family members, other friends and carers. This is not just for my Fibro but also for other medical conditions, and help with my beautiful lady wife who lives with Multiple Sclerosis.

    Naturally, I would never forget all of the amazing support and friendship that I have ascertained from the forum and its members. You are truly the best bunch of guys anyone could talk too. You are all wonderful, thank you.

    All my hopes and dreams for everyone

    Ken x

  • I have a great network of support from family.and I will be getting PA.'personal assistant ' from social services. Have been granted 14.5 hrs a week.this will be a massive help for myself,and especially less pressure for my wife.who has had to take two jobs as I was main wage earner in our household.

    If ppl need help do contact your area first response team.social services. This has opened many doors for us.and I've received many appliances to aid myself.

    Since then I've gain courage to contact my local ssafa team.and I'm in process of waiting on a new powerchair which they are finding funding for. As a Veteran I was unsure what to do. .this will give me more independence and since money is very short in our household this is a relief.

    I hope I've given few ideas for ppl to try.keep well ppl.x

  • I've just posted my own comment before reading other people's Ken, and you have pretty much summed up what I have said and feel.

    Hugs, Margaret.xxx

  • i have no support network.

  • That is not 100% true you have us on forum!

  • You truly find out who your friends are when you have a chronic disability!

  • I agree with you guess...you get the feeling unwanted or afriad to asking for help becuz ppl let youdown

  • I have not lost contact with family or friends but am looked at differently. Because I look OK most people expect me to be able to do the same things I used to do and don't understand me turning down invitations, etc.

  • Same here - I've found exactly this. Although my family are very supportive, my friends have still sometimes expected me to do the same things as when I was fit and well and don't really understand when I cancel last minute or I'm restricted at the last minute - i.e. I'll say I'll go to a concert with them but halfway through the evening I have to go and sit down as my legs give way, even though I "look okay" and I might have been fine the day before...

  • Absolutely agree, this is one of the most difficult things to deal with for me. X

  • I have lost contact with friends but not sure if its because of my conditions or because I had to stop work. I don't see so much of family either as I don't go out so much. Things in general are more difficult. Other than my lovely hubby and our dog Eddie I don't have any other support other than HU forum.

  • No support group locally?? you might be able to make new friends who understand even if it's online to start with ..... :)

  • Hi TheAuthor Ken, Hope your doing well my friend and Julie as well.My family is always there for me as far as friends,I don't see them as much but by my choice.I prefer not to stress over having to deal with telling people the same thing over and over again so I take it one day at a time.Take care, Peck 🐤

  • Hi Peck, how are you honey? Haven't seen you around much lately and I was beginning to get a bit worried about you.

    Margaret.xxx

  • I don't have a support network

  • You have us on forum!

  • As Skit says ....you've got us here :)

  • this is my 1st time at posting...

    my partner and I,both have fibromyalgia and to be honest it's just me and her.people who we have dealings with don't know much if anything about fibro and don't understand symptoms ECT.it is difficult 2 say the least.

  • Welcome Sharonz .... Do keep posting as the more you contribute I am sure you'll find members are very supportive :)

  • thankyou Mdaisy,

    i do read the forums,and yes, you do see people helping each other,through the trials and tribulations of fibro.

    it is comforting,to see and read.

  • Welcome to the forum sharonz. You will get support here. gentle hugs to you and your partner. Joolz.x

  • aww.thankyou.x

  • Although I have a lovely family,I think because I don't look any different,they seem to be in denial and don't talk about my fm. I've always been the stoic linchpin of the family but now I can't be relied upon.i tend not to tell them how I'm feeling. My lovely,poor husband bears the brunt. He's not one for talking and discussing emotions ,preferring just to 'get on' with things.

    Thank goodness for this site. I read the posts everyday. I am not alone.

  • I think there is a real connection with being the "linchpin" the strong one of the family and fibromyalgia because most people I know with it .have been the "givers"and the support of everyone else...seems our bodies eventually say "no more " and need a break from looking after everyone else ALL the time .x

    what do you reckon?

    G*

  • I've actually thought this myself. After a lot of years of continuous stress things became much easier and my life was/is lovely. Since I've been able to relax and enjoy a completely new life, I developed an auto immune disease and various other symptoms (although I now know a lot are linked with this fm) I was as fit as a flea when rushing round and meeting myself coming back. Maybe I wasn't allowed to be ill as I had 2 young children to bring up on my own.

  • I agree crazy-diamond, If I remember rightly, some time ago there was a discussion on this forum about this. A high percentage of people with fibromyalgia kept everyone else going, friends, family, work colleagues, even strangers. We thrived on being busy - pushing ourselves to achieve, not listening to our bodies. I used to be the glue in my family that kept everyone together but no longer have the physical or emotional strength. I have very little choice whether to listen to my body, but must admit it's still difficult.

    LG x

  • Hello everyone i have fibro and copd 4 yrs now, i was sociable active outgoing and positive, now im none of these, lost and lonely now, just wanted to voice what these conditions can do to you, try not to give up people life is precious.

  • Thank You for your comment - So sorry to hear you feel lost and lonely, you always have someone to talk to here :) Are there any local support groups for either condition you may be able to attend? I think there is also an online community here on HealthUnlocked for breathing conditions you may like to look into. If you need help to become more mobile, maybe you could talk to the social services about having the Occupational Therapist visit if they haven't already. :)

  • I have to say most of it isn't due to stigma; but due to my inhability to interact the way they want me to I.e. Going for meals and days out. This is due the effect of Behçet's disease, fibromyalgia, osteoarthritis of spine and hips, arthritis hips, knees, feet and hands, angioedema, spondylitis, migraine disease and so on and so on.

  • I understand :) If only we had a magic ball to see what days will be good and which are going to be a duvet or PJ day ..... well in advance ..... :)

  • I have lost a few "friends" but family mostly supportive. Local psychology services provide good support.

  • Can you make new ones who understand maybe.....any local support group near you at all? :)

  • I have lost my work colleagues friendships due to having to give up work.

    I have no support network. Family do not understand. I am a full time carer for my son, yet there is no one there for me. The irony is, i often need the support more than my son.

  • Hi Loreen,

    I too am a full time carer for my 86 year old disabled Mother in Law, I struggle most days as I have fibro, osteo arthritis, and spondilitus, we get no help from social services. So completely simpathise with you.

  • Hi Carry-on62

    Sorry you find yourself in a similar situation to Loreen looking after someone even though you need support. Have the social services said you do no qualify for help?

    Are there any local charities/community groups that can help support you? Can you speak to the CAB maybe if you haven't already of course x

    Emma :)

  • Hi Loreen,

    I really feel for you ......it sounds like it can be a touch situation to deal with, we are here to listen and I know all the members here will always try to support you as best we can.

    Are you here in the UK? If so, have you spoken to social services or any local charities about respite for you as often if you qualify for direct payments you can use this to pay for respite. Maybe you could try to find out what may be available to you locally if you haven't already.

    My main concern for you and your son is that you keep going and make your condition deteriorate by trying to cope without support, which could ultimately make the situation worse ......please do take this as concern and I hope you find some support for you and your son. Then maybe you could find some time for you to make new friends too :)

    All the very best

    Emma :)

  • hello Emma

    Thank you for taking the time to reply. I do appreciate your support.

    Yes we are in the UK. Sadly, social services will not help. We had an assessment last year, because I felt I could not cope with the long summer holidays without some help.

    I was basically told that because I meet my sons needs,and that he his healthy , i can not access help. It seems you have to neglect your children before social services will help.

    We are now 2 weeks from the summer holidays again. Mentally and physically I am more unwell than last year, but they will not even reassess us.

    The support I receive on here is lovely. Thank you xx

  • There are a couple of so called 'friends' who don't keep in touch, but that's their doing, not mine. I have my family and close friends who are supportive and that's fine by me! Oh and you guys of course!

    😊

  • Sisters are good but grown up children not. Unfortunately seen as thou I can't run around after them they barely visit.Invite them over so can see them and grandchildren as I miss them but it's rare they come.Good job my husband is fantastic.

    Really only had friends at work. It's hard to keep in touch when not there anymore as you don't fit in.

    I log on here every morning for company and to read all your stories

  • Hi Fra22-57

    Glad you find this community so supportive. It does sound like you desperately miss your children and their children, could you write a well written letter that the family can take time to read and digest and be completely honest with them. Maybe this may help, I do hope so :)

    Emma :)

  • I Only have my husband and my older children for support but they dont really understand thats why its nice to speak to people on here or just read through comments of other real life sufferers.

  • Hi 👋 everyone

    I have lost touch with all my friends by choice as I really did not feel sociable and I was to ill 😷 to have them come around.

    The ones that have really been there for me is my oh and Brother. Also my neighbours who offered to do what they could for me one particular neighbour was very very good and took my little dog out every day and looked after him 🐶 until my oh came home 🏡 from work.

    I have to say that I have met some amazing 😉 friends on this forum and you have all helped me to get to where I am today. I want to thank you 😊 all from the bottom of my heart ❤️ ❤️❤️.

    Sending everyone warm hugs 🤗 🤗🤗🤗 and a massive thank you 😊

    🌷🌺🌹🌹🌺🌷❤️❤️❤️❤️❤️❤️

  • Warm fluffy hugs back at you Jan101. xx Joolz.x

  • I've told virtually no-one

  • I've lost touch with many friends. Not due to the stigma but because I don't/can't go out socialising like I used to and eventually they give up trying. People don't understand what it's like to be in pain everyday.

  • The go to group now and then, the problem, most of the people are in wheelchairs. They sit there talking about how much benefit they can get and leader tells them how to go about it, what forms to fill, most are very overweight, and just sit there moaning about their aches and pains, yes we all get pains. Why don't they look up e erything about fibro and try things themselves, these people go every month, she has lots wrong with her, but everyone is different, and pain threshold is different.

  • My family are great, and help me a lot, but certain friends have been very elusive. You learn who your true friends are.

  • I'm lucky that I have 2 friends with same condition.

  • My family & friend support network has grown stronger as my condition has worsened. I feel very blessed

  • I have no support network from anybody and family and friends have left me behind

  • I have a local support group. Made some lovely friends. We are all supporting each other.

  • I feel this is an important issue that should be talked about more in society in general. And it's not just in relation to fibromyalgia but any chronic illness.

    Luckily mine and my husbands family are lovely and I still have the same relationship and contact with them I always did. And my husband is and always was my best friend and rock. But 'friends' are a different matter. I still have contact and support from a few really good friends but the vast majority of my wider circle of friends I now only see online and not very often either. If I wasn't on facebook (which I am no fan of) I would have lost all contact altogether with most of them. I even have one person who was a really good friend (or so I thought) who I have not seen for about five years and never contacts me online. She only answers if I contact her, so I've pretty much given up trying.

    I think that's the problem. Many people don't understand chronic illness and the issues it causes those who suffer. And I don't mean just the condition itself, but the impact it has on a person's life. I'm sure some people think, well they never make the effort so why should I bother. But with fibro and for me my condition ME, many people have it for some time before diagnosis. I had ME for nearly 20 years before it was diagnosed. And yes I wasn't the most sociable of people outside of work because I never felt up to it. At the time I never knew why and had no excuse to give people for not turning up to events. So consequently I'm sure people thought I was just unsociable and couldn't be bothered so don't now see why they should put themselves out. Too late to try and explain now as it just sounds like making excuses.

    Because of that I also think the hardest ones for me to accept are the friends I have lost that have chronic illness either themselves or in a close family member, like the 'friend' I mentioned.

    And as far as online friends are concerned, I now have far more contact with new friends such as yourselves and those on other similar forums than I do with most of my 'real life' friends.

    Not sure if that says more about me, my particular friends or society in general. But I can't help thinking that chronic illness creates yet another division in society that only a few kindly, almost saintly souls are able to straddle. Like my next door neighbour who has been an absolute saint helping me this week whilst my OH is in hospital having a knee replacement. In fact all things working out she is hoping to take me in to see him this afternoon. But you see . . . she is physically disabled herself and her hubby has chronic illness.

    Love and gentle hugs to all, Margaret. xxx

  • Well said Margaret. I was the same with socialising especially with work colleagues and it wasn't because I didn't want to, it was mostly because I just couldn't physically cope. I too had a friend who knows what is like to have a chronic condition and used to say to me that we would be friends forever because we understand each others struggles and yet she was one of the first of my "friends" to stop contacting me or answering my calls when I had to leave work due to ill health. gentle hugs Joolz.x

  • Yes chronic illness and disability really brings home who your true friends are. It's good to know that I've had it confirmed this week with OH being in hospital that we have some kind and lovely neighbours. In fact one of my neighbours has been popping in every day for a chat and doing a few bits and pieces, took me in to see OH yesterday. Literally just left my house with a cheery goodbye after a chat, watering my plants for me and helping me with my meds. Good to know there are still some kind souls around.xxx

  • How lovely to have such caring neighbours. After the awful things going on it gives you back faith in human nature. hugs Joolz.x

  • I've tried to find a support group but I think ours has closed down and I need help in so many ways, I'm in Hastings, East Sussex. Edited By Admin

  • Hi Chris-1969

    I have pasted for you below a list of the FMA UK Support Groups for your region. Good luck my friend:

    fmauk.org/contactsmenu/supp...

    All my hopes and dreams for you

    Ken

  • My family show no interest whatsoever in fibromyalgia, therefore there is no support. One of my children is a Therapist and has written the condition on her leaflets which tells me she is aware of the condition when it suits, this cuts me to the quick especially as I am not offered any therapies for my condition, I have offered to pay for a massage but this causes embarrassment hence it is easier to ignore my situation. I am not offered any help but rather I am still looked on as the family helper. I am one of those people who tries to look presentable which makes the condition even more invisible. I cannot tell enough the value of this website and the wonderful support given here for which I am eternally grateful.

  • And probably been the helper has brought this on you... I know stress and PTSD caused mine.. and yet no matter how poorly I am still they come to me to solve their woes... I honestly feel stalked sometimes... as soon as they are ok they disappear.. I'm so hurt my their complete lack of care and consideration for me... I feel for you I truly do... xxx

  • Thank you Needsleep you are right of course, when your childhood conditions meant you became a rescuer and society still expects mostly women to do the caring, it is an uphill battle to change things, still we try, putting boundaries down for ourselves are very important. Your empathy is appreciated xx

  • Sounds exactly like my family. And I am positive stress and possible PTSD caused my very severe fibro.

  • it's so so true ...."friends"come out the woodwork if they need to moan about something then disappear again!!😨

    G*

  • My family do not understand the condition it has caused a split in family which is sad as we were close.. I also find my GP never addresses condition just hands out tablets!

  • I totally agree... xx

  • I honestly feel that family and friends don't believe I am ill... even though some days I can barely walk or talk.. struggle to find my words and lose the thread of what I'm talking about... some days I can barely get out of bed... and my so called family and friends have watched me struggle to paint or do my garden even though my arms are bandaged up to help me... they just say well don't do too much.. or.. leave it for another day... happy to see me live in a mess... even the friends that reckon to understand do the same... it's a lonely place in the fibro/ME world... 🙁 Xx

  • Oh yes that's a good one "leave it" or "don't do so much" are words I often hear, no help forthcoming from those who say these trite words.

  • Although I am still in touch with most of my friends, some of them have changed in their attitude towards me. My family are all very supportive. The friends on here are wonderful and will always listen.

  • The ignorance that comes with this illness is huge

  • I feel that they all think i don't care about them when i do but not one of them care about me so why should i worry about them when they never call to see how i am but think i should call them everyday if i don't they get funny with me and say i didnt care or don't answer the call i try and try but they never give me a call so very should i because i care but all they show me is they don't i used to let it get me down not now so i just worry about myself and my illness and do whats best for me and not worry about others any more and i am better off with out ppl that don't care about how i'm doing and try and understand what my life is like with this illness or even understand the illness and what it is i have tryed to tell them and even given them web sites to go to and read for them self

  • My GP will not give me a diagnosis, says all my problems are thyroid related and he's not prepared to deal with them. :(

  • Just a thought ... your GP can't actually " diagnose it" it has to be validated by a prof in that field... rheumatologist I think... insist on a referral to one to at least " rule it out" even though you know you have it.. your doctors diagnosis wouldn't stand up to the pip assessment ...mine was certain I had it but needed clarification from the professional in that field... same with ME .. xxx

  • Things might be different where you live. Last visits to rheumy were a disaster for me. He just wanted to put me on drugs, tried several but as I was intolerant to them all I was discharged, without result. As for ME, someone close has had ME for thirty odd years and never seen a Rheumy yet.

    I don't want PIP but relief from pain would be good. xx

  • I meant the GP can't diagnose fibro or ME.. only the professional in that field can... that's what my doc told me anyway... so rheumatologist for fibro and ME/CFS clinic for the ME... my friend suffers with chronic pain and couldn't tolerate anything they gave her... she can just about tolerate paramol though... bought over the counter xxx

  • Yes I know what you meant Needsleep, but what I was saying was because I couldn't tolerate the drugs, I couldn't get a diagnosis either for Fibro. or Psoriatic Arthritis. Gp is again reluctant to refer me to Rheumy, seems to think it's best just to live with it. ( I'm still fighting to stay on T3 for my thyroid as I can't tolerate T4.) xx

  • Be insistent...you want to see a rheumatologist ...calm but assertive ...!

    It took a while for me so don't give up.😊

    I've got fibromyalgia, psoriatic arthritis and Thyroid trouble...to name a few!

    G*😙

  • IF I ever get to see my GP (I am a waiting list) I will be more assertive, mind you I have a list for him. x

  • Lost family and friends. Very hard to make new ones.

  • Fibro is a difficult term for a difficult disorder. My fibro symptoms are deep tissue pain in my arms & legs. My feet themslves, along with my hands are in constant pain. Taking painkillers only seemed to work such a small bit that unless it becomes very bad I keep off them. To live with the fibro thru meditation, rest, stretching, yoga all help to ease the symptoms. But it is a constant all the same

  • I don't really discuss my symptoms with family or friends, because I feel people just don't understand and think it's a made up condition.

  • My 25 year old son is my life line these days, I don't know how I would manage without his care and help. The rest of the family try to understand what it's like but I don't think they actually believe ii'm as bad as I am. I also suffer from psoriatic arthritis so some days i'm no use to anyone. But it doesn't stop my eldest son asking me to look after my grandson who is 4, while he plays cricket??

  • The only person that I have is my 23 year old daughter! When I found out my definitive diagnosis of fibromyalgia, I told my mother, and her reply was, "tramadol work for my back"! So Needless to say I ended the conversation. So about 2 weeks later, I seen my sister for the first time since diagnosis (baring in mind that my sister see and talk nearly every day) I asked her if she was aware of the fibromyalgia that I had been diagnosed with? She replied "no"! I couldn't believe it but never let on that I was surprised. So all she could say was, "my 2 friends have fibromyalgia and they really struggle" so my opinion of this situation was her inside thought was "REALLY"!!!? so I have made the decision to expel the parents and sister from my life entirely!! Basically my thought process was to get rid of all toxic people, regardless if their family members, from your life if they don't have the ability to show empathy, in turn can give you the support network that is so important for our mental wellbeing. So that procedure has left me with my daughter as my only port of call as it comes to my support network. I also have mental health issues, which only exacerbate my pain, fatigue and sleep problems, and all the other symptoms that come with fibro. Just started a new medication combination, and waiting for CBT and OT, so if these bare fruits, what I done with regards to the 3 toxic people, will be validation for my extreme actions. Since I joined HU back in December, I have had more empathy and super advice from members than my family have given me my whole life!! So a huge thank you to you all. John.

  • I havent lost contact with my family, but because they cant see the illness theres not a lot of understanding or care,havent got the energy to explain anymore i just handle things in my own way. Dont see friends as much as i use to,not always up to socialising, at the end of the day i think we can relate to each other better than anyone thats good enough for me take care xx

  • Thanks to Our Fun Filled Friend Fibromyalgia I can honestly say that I have never been so alone and lonely than I do now.

  • Very few of my family/friends are aware that after roughly 20 years of understanding that I had a neurological condition, possibly related to the family history of neurological issues, I was seen by a Dr who saw me once, fairly briefly and dismissively, decided to change it to Fibromyalgia without any examination or anything other than a brief discussion. I always understood one should have tender points to get such a diagnosis, I don't have any. I think it was more a case of deciding they needed to give me a definite named condition rather than anything else.

    It gave them the excuse to insist I did a pain management course, what a joke, in my last job I helped set up a local pain group, I've been following pain management advice for donkeys years, I spent the course working out which exercise they are going to suggest people did next, we were always being asked what we did in certain circumstances, I was right each time. Waste of time and money.

    In part I do fit the diagnosis, but it fits as well with at least half a dozen other conditions. A name does it provide any solution if there is no meaningful treatment attached to it. I've been taking Gabapentin since 2000, prescribed by a pain consultant in Leeds, specifically for neurological pain relief. It works well for me and has reduced my pins and needles/tingling considerably.

    Sorry for the bit of a rant, I usually just get on with my life, it was a bit too tempting on this occasion when I do feel rather frustrated by other things more than this!

  • Yes I do, most of them think I can't go out or do things any more so I get left behind, some are really thoughtful things but I feel like say hay I'm not dieing I just need to sit more then u do

  • have lost friends (or were they true friends?) because sometimes had to cancel arrangements. The ones who say "you look fine", duh,, do they need specs! Now I just do what I can when I can and appreciate the people who do still come or phone me.Have had bad week trying to complete excercises from physio which are helping some bits but making others bits feel worse. What to do? Well tomorrow is another day and I can only hope things

    will be more manageable.

  • I am very lucky that I have support from my daughter's and my husband and a close friend.

    My friend also lives with a chronic illness along with her hubby. My own hubby has ME so they all understand.

    This forum has been invaluable in the advice I have received and the friends I have made.

    Unfortunately I have lost some friends who just do not understand how FM works or can affect you. I realise now it's their loss!

  • Online support groups and online friends who also have FM or other chronic conditions

  • Yes

  • To everyone.

    We have each other on line. There are over 100 real support groups see mother site fmauk.org.

    On same site you can request a simply written booklet about Fibro. I strongly suggest if you do not have one get armed with one for family and friends to read. Ignorance is not bliss with Fibro. So many people look up on line and get disheartened my sites. Booklet is clear and positive.

    I urge all to take support as a two way street. You need support fine but others need your support to understand your condition!

  • I still have contact with all family and friends but my main fibromyalgia support is on here as I don't want all conversations with family and friends to revolve around my health and diagnosis as when I do people either express pity or think I can't do and I'm a total can doer and that will never change rightly or wrongly! 🤗

  • Hmmmm. My greetings to you our very zen Ken, I trust you are as well as can be and Coping - with a Big C.

    Interesting selection of possible answers. I deliberated long and hard over which to tick but didn't feel any adequately described my situation so I plumped for Other.

    I'd say I receive wonderful support from SOME family and friends - In truth, it's more a case of 'Ever Decreasing Circles of Love'!

    Each year I notice that I'm invited to fewer and fewer events and visited by fewer and fewer members of the family and friends. Many have been consigned to 'Special Holidays and Notable Dates'. However, my telephone calls, texts and even emails have remained relatively high. Old colleagues in particular, still seek me out for a quick natter and catch up - and are very understanding about giving time to rest and get back to them when I can.

    Over the years - well, just over three now, I've become aware that I'm more of an 'afterthought'. It's a case of 'what about ....' whenever anything's being planned, but I console myself with the fact that most of them have become quite knowledgeable about fibromyalgia (including CF and ME) as well as all my other health issues and are, to all intents and purposes, my personal advocates abroad.

    Finally, I wouldn't say I'm in any way stigmatised by family and friends for having Fibromyalgia - Stigma feels like such a profound and disheartening expression. Perhaps I'm a little niaive but the bigger, more general fear of being stigmatised for 'having a disability' is something I've struggled with, especially when I was first diagnosed, but not 'encountered' from family and friends thus far - overtly or otherwise.

    The disappointment and frustration of family and friends when I'm unable to attend or participate fully in events is often 'palpable' sometimes even vociferous - but only because they miss the old Me. then again, So do I.

  • It seems a shame that people should have lost contact with their family support just because they have been diagnosed with Fibromyalgia. I have fought this disease for years and when I got a diagnosis I was devastated. I read a few books and had to take three weeks off work with stress, then one day I thought "Margaret you have had these symptoms for years and not known about Fybromyalgia, nothing has changed, only now you know, so why let it affect your life - you haven't up to now". Find ways of battling it out, find information, share information with other sufferers, take painkillers when you need and find out what can make it easier. Above all don't let it affect your relationships; explain to friends and family what it is about so they can understand - I found a great letter on line and got them to read it so they could better understand. By finding ways of managing the effects I have lead a "normal" life but please don't shrink away. It takes two to tango and your input into family and friend relationships is just as important as theirs. If they understand that sometimes you must dip out of events because you can't cope and they know why, I think you will find them much more supportive. I may seem a bit harsh here, but positivity can push you a long way in life. Keep your chin up!!

    Regards

    Margaret

  • I have lost touch with some people, but gained two much better friends through an online community that is not specifically related to disability or illness, but does have quite a lot of disabled and I'll people participating. I made the two especially good friends there, and one comes to visit me every year at my home. There is support online, as kind and good people will band together just as they do in health unlocked forums. I think it is easier online as we don't have the pressure, stigmas and unfairness of physical appearance to cope with. We can be more genuine and open without worrying about public rejection or exclusion. That doesn't mean people don't get hurt or behave badly, but it gives us a bit of a buffer. Also, we have privacy to keep to ourselves when feeling crummy or fragile emotionally. It feels great to talk to people we might otherwise never meet. I am enriched by knowing people from many countries and professions.

    But it still really stings to remember two former friends who became judgemental based on the opinions of relatives (a physiotherapist for one and chiropractor for the other) whom they asked for their opinions about fibromyalgia, and then believed their stigmatising attitudes instead of the educated and informed words and experience of me, their friend. It seems despite knowing for several years, they were not true friends at all.

  • I have fantastic support from my family which is the most important thing for me but like others I've lost friend's, sometimes my fault as I distant myself from some people who I know don't undetstand my illnesses so just expect me to be able to carry on the same as they do. Other friends have distanced themselves from me as they seemed to not understand or know what to say. But I'm thankful for my "friends " on here. Linda x

  • I have lost all but one of my friends, they simply don't understand how I went from up for everything kinda girl to up for nothing. My one and only friend has been the only one to listen understand and research this condition and has been there for me during my darkest moments, she has even admitted to me that going on this journey with me has helped her deal better with her colleagues that have been suffering with stress and depression, initially she thought depression could be fixed by "just getting on with it" she knows different now. I feel proud that in a small way I helped her too.

    As for my family they are still around and are supportive but again don't truly understand what fibro is like and how many different symptoms are involved.

    I don't often post to this support group but I do read the post's, simply because I struggle to find the right words to express myself so a big Thank you to u all for the insight it gives knowing I'm never alone xx

  • I have my Husband and 2 sons. I ask my sons to help and they do, but I try not to ask too much as they have work or college etc. I've lost all extended family...my husband's family...not nice people but that's another story...I couldn't handle the stress of them. I have one sister who 'means well' but has no empathy - she was just never gifted that way...it doesn't upset me like it once did but I will put off a visit from her if I don't think I can handle the comments that day. xx

  • My main support is my husband. I find this website very good too. I'm in touch with most of my family and friends but since being ill, our relationships have changed and wained as our relationship previously was based on me doing things for them. It's taken 6yrs for them to understand the illness and realise that emotional support is just as good as me running around for them and that's all I can do for them.

    Saying things like, I don't want to be in pain I'd much rather work, has helped them to see it as my battle and that I'm the same hard working person at heart.

    Lydiah

  • I would never say fibromyalgia had a stigma - when I say that's what I have I generally get a positive response, much better than when I used to say I have M.E. (very negative - now that's what I call a stigma!). I have lost contact with most of my friends, and some of my family but I thinks that is because of having a chronic illness rather than it being fibro.... people don't take long to stop "making an effort" to contact you... I believe that friends are with you for a reason, a season, or a lifetime, and that life rolls on. I find letting friends and family "go" saves you sometimes. My circle at the moment believe me, accept me, and don't ask me to do things they know I can't/won't be able to do. This helps me to feel "normal", and boosts my general well being. Please don't think I do't suffer from fibro, I do, it just feels ME.

  • Because we both have chronic conditions gradually over the years we have lost friends and to a great extent family. We are generally alone with our problems but we manage and I don't want any outside help yet, that will come I'm sure but for now we get on with it. I do have my 4 beautiful cats who give love without asking for much in return unlike a lot of people!.

  • I have more help now than anytime in my life Family and friends

  • I've lost contact with both family and friends excluding my parents and my husband x

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