I’m struggling as it is and my ‘partner’ is niether empathetic or sympathetic to my condition. I do not get a great deal of help with anything and he has suggested that fibromyalgia is ‘made up’. Just because it’s invisible doesn’t mean we’re all making it up !! Grrrrrrr the stress is like a viscous circle 🥺
Is your partner helpful ?: I’m... - Fibromyalgia Acti...
Is your partner helpful ?
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Busymumma22
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It might be handy to try to look at it from their perspective and what your being ill means to them. For example, my partner becomes more distant the more unwell I am. This I know, is he’s terrified of losing me and shuts down. Until he deals with that issue, which I know is exacerbated from his child past, he won’t change. I’ve accepted I’m on my own and outsource my help in whatever way I need. It’s not great but that’s the reality.
Same here Snazzy. I don’t now even tell him how I’m feeling I just try to deal with it myself. Had to get a cleaner in once a week to help me. My husband has never done much around the house even before I got sick.
My husband will do nothing. Not even take a bin out or mow the lawn. My grandad would be horrified if he was here 😊
Well you’re not alone. I often think my Dad would be horrified. He was a very kind carding person but my husband is very selfish. I haven’t the energy to get divorced nor am I in a position financially to get divorced so I just get on with it.
Sorry to hear that. I have the same issue, my partner sees my illness as an inconvenience and treats me worse when my symptoms are worse. There is zero empathy (NPD related unfortunately). Consequently right when I need the support and kindness it's absent and honestly it make the flares worse than they need be imo.
I have just accepted likewise that I have to manage on my own. Not the way I'd like things to be.
On the plus side I undertake things I might otherwise outsource to my partner (if things were different) and that makes me realise I am still capable of doing more than I think.
For years my daughter got angry with me when I was ill and in pain. She criticised me a lot and she said I would be okay if I would just lose weight and exercise. She said it was all in my head. Her attitude was that my problem was being fat and lazy. I even wondered if she was right!
During her last trip home, she was able to see what I was really like and she is completely different towards me. As you say it makes things harder than they need to be and because of the added strain dealing with these attitudes, it probably makes the illness worse. My heart goes out to you. It's a lonely, misunderstood place to be 💕
Awww that’s a lonely place to be I have found here on these stories I am not alone and I have not told my partner I read them or contribute this is my world not that I have a bad time from him or anything he helps me and is there for me as I am him talking about things we always talk and cook together we have a stool in the kitchen and always try to get it first trying to make the other move and jump in their place it’s a game but if he see me struggling I know he offers me the stool I am lucky and blessed to have him there are times I see him struggling with how I feel but that’s because he can’t stand to see me in pain not because he doesn’t care sometimes men can’t express feelings I say that but I think by putting there heads in the sand is experiencing them selves this is because they can’t fix’s you don’t know how to stop it some can expect better and find or help find solutions that help I try to minimise how I feel and not put to much on him it’s just apart of managing my life it a whole my discomfort my anxiety my fears my partner it’s all part of my life so I try to manage it just as I would the pain the anxiety and so on he’s apart of this so I do not see him as not caring I look at what he’s doing that tell me he is caring going to work paying the bills even when I feel I don’t want to going shopping so many little things but hugely big to me and I love him for allowing me to be me 🥰
I too keep this for me and not told him that I’m on here. I think if I don’t try and talk to others going through this condition then I’ll end up going stir crazy. I have 4 boys under 9. When I had the first 3 I was fit and healthy running after them with boys they keep you young! And then I had a gap and had my 4th the second week into lockdown on my own, then had to try and breastfeed my newborn whilst homeschooling the other 3 and having partner working from home telling us that we had to be quiet 😂🤣😭 hilarious. So when the rheumatologist asks me if I have had any trauma… I tell her this. I had pain and discomfort in the birthing area after birth due to the midwives negligence and baby was born blue! They tried to say that maybe my baby was not fair skinned like me. How dare they, the bay was in the birth canal for too long and she kept refusing to check me even though I could feel the head!! So after emergency button pressed on comes the experienced midwife and doctor who helped me deliver my baby safely. I had discomfort after the birth which I never had with my others, I was only in labour a very short time and all of a sudden I have SPD ?! So that then was where my story continued with hip and thigh pain and as the year went on it got worse things spread and bloods and X-rays later finally had an MRI, the spine looks ok however there is something suspicious at the back of the pelvis so I’ve been told the consultant is having a meeting with radiology on Tuesday and I’ll finally get my results. Sorry for the rant but that feels better!! You take care of yourself x
Good to vent take care of yourself too and hopefully the results will give you a better understanding of your body right now I have had five children all grown now I believe my hip pain comes from this understanding is something that helps ourselves put things implement for copping and managing x
It makes me so furious when people say ‘we’ll you have had 4 babies close together’ well that that be no one else’s business it’s hard when people are sooooooo judgemental. My mum had 5 babies, her bladder and other parts are like iron, she never had any issues and then there’s the biggest family with 20 odd children and you don’t see her crawling along the floor with fibromyalgia 😂🤣 so when people at the school put their 2 pence in, I no longer talk about me at all. I keep me a special ‘thing’for my family and real friends who care and understand x
I'm so sorry you've been through so much trauma. My heart goes out to you. I hope the medical news is good and I hope they can remove what's causing the pelvic and hip pain. I will be thinking of you and praying. Please let us know how things are going soon
Good for you, expressing yourself safely on here. I hope everything goes well with the hospital. Take care 🤗
My husband thinks it is all in my head - I have to remember no matter how bad I feel not to say anything to him
So frustrating! My partner watched a family guy episode where they were mocking fibro saying no one actually has it.. and he thinks it’s hilarious. Yet I’m the one who walks to the shops and gets the shopping and carries it back (he has a car) I take the boys to the park, walk them to school which is 40 minutes there 1 way. I do that 4 times a day. If he finishes work early he won’t tell me because he knows I’ll ask for help, so he goes straight home, showers then infront of the game or tablet for the rest of the evening. He’ll moan if yea is t up to standard and if his clothes are not ready for him. He’s not happy unless he’s moaning. So I am pretty much run ragged and done! He wants us to move and his gripe is that it’s my fault we’ve had to postpone because of my illness and condition. Well I asked the gp if a referral can be transferred and the answer was I expected it to be.. a nope. So I have a trillion and 1 stresses. He was expecting me to move and then start at the beginning of my journey… ummm nope I don’t think so.
Why do you stay?
I have felt like I’m responsible for him over many years. I have tried to help him, some people don’t / can’t change. I don’t think he wants to. My family hate how he has slowly broken me over the years. I have been planning and arranging for somewhere else to live and Lockdown had a huge impact on this. However I’m now in a position to leave. My boys need more and so do I and so we are going. I am not his mother and I don’t wish to have a 5th child. He can be cruel. I am not perfect, haven’t yet met a person who is! He has pushed and pushed for us to move away to somewhere I will be isolated and not know anyone, though I’ll have my family there.. they have their own families and lives.
So I’m going to start afresh somewhere new and exciting. Very nervous but this is me now putting myself first and before the need of others. Thank you x
That's a relief to hear, it sounds like he was slowly killing you! I can imagine the reluctance especially having to remove 4 kids from their father but it doesn't look like anything could improve while you are in that kind of relationship. Plus if you're bringing up 4 kids you are obviously pretty dam strong and pretty amazing at multi tasking. So much of chronic pain is linked up with emotional trauma, someone needs to be looking out for you and it looks like that person might have to be you if he's no help. He sounds like he deserves having the wind put up him anyway!
Yeah, my daughter still thinks it's psychosomatic. People are going to think and say what they think and say. I just let them be who they are. My thoughts and prayers are with you 🕊️
It really shouldn't be like that, but it is for so many, including me. We will listen to you
Thank you everyone in here is so kind I want to cry!! x
That’s exactly what I do. My husband told me 10 years or so ago that nobody wants to hear me saying how bad I feel so now I keep it quiet and offload on very good friends who care and this forum is great too.
YassytinaFMA UK Volunteer
My hubbie has never been very domesticated I notice it more when I’m unwell, he more of a DIY man which is helpful but sometimes we want too ask for a bit more help indoors , I think more so when you have children as that’s tiring enough for anyone without conditions. If only people could walk in our shoes for awhile they would differently have more empathy xx
I am so sorry. This happened to me much later in life but my husband was never much help with the kids/ still in major denial about our adult son on the autistic spectrum. He says stuff like “he needs to grow up”. Our son lives on his own with some paid support and I generally visit once a week. In the 5 years my son has lived on his own- my husband probably visited 4 times( he lives 20 minutes away) and our son has been at our house for holidays a few times a year( our son prefers to be at his own place). Since I got ill last year, I have had to ask my husband to drive me to our son sometimes or go without me. He does it grudgingly or puts it off. I do go on my own when it is a good day but our visits are shorter and different- we used to walk in various parks but I can’t now. My son’s paid supports do go out with him and my son works from home. My husband would ignore him totally if he could- similar to when the kids were growing up- I did most everything. I see the pattern of not dealing with our son and now that I am ill believing or pretending to believe it is fake- all in my head.
One of my daughter's is autistic and her dad still believes she will "grow out of it". He has been no help whatsoever while I've been fighting the council for a statement and a specialist school. His current wife and I have bonded over how aggravating he is!
Thank you
I was main earner in our marriage, I worked full time nights raising 3 children with very little help , cleaning cooking and kids are women's work but so is decorating helping him work on car etc . I injured my back in work and had to retire developed oa then fm . His comments were I enjoyed ill health and he was too young to be saddled with a cripple we divorced after 40 years of marriage. When they said I had fm I was mortified I had this fake illness that didn't exist it was all in my head I was a mental case etc all the things he said to me during those last few years where he made my life a living hell and made me feel so guilty that I could no longer do all the things I used to . Its so hard without any support. Xxx
It is. My brother in law calls it a designer illness. He said he wishes he had a designer illness so he can get paid to sit on his backside. I reckon 1 day of it would kill him 🙄
It's taken years for my husband to realise that I am really ill. It makes it hard because you have to try to manage on your own. For me, I always felt guilty that I couldn't cope with everything. The guilt and the shouldst stayed with me until I came on here. Now I don't feel like I should be doing stuff that I can't do and, after listening to these lovely people, I listen to my body now. It made a huge difference 😘
Designer illness!!! I'd give him 1 hour of pain on a bad day and he'd be begging for it to stop.
I know, right!?
Although my husband acknowledges that it is a real condition, I feel like he forgets. Like making me carry a marble fireplace because he needs help at the tip. Things like that. He says it's because I don't let fibro get me down or stop me from doing things and thinks I'm fine. My kids go mad when they hear I've been lifting and grafting. They are 15 and 17 and the only ones who understand. My parents are oblivious. Maybe it's because they can't see it. We don't have a missing limb or something they can see. It must be hard also to imagine what it actually feels like
My 8 and 9 year old are very caring and understanding even at their age. And they say things like ‘mummy needs to rest because she’s not feeling well’. And that daddy can do this and that and stop being lazy (as they see him sat on his game 80 % of the time). I have results of MRI due tomorrow. I’m led out on sofa as I’m done in and partner says ‘don’t worry you get your results tomorrow and it’ll prove there’s nothing wrong with you and it’s all in your head’.
Words fail me. He has depression. And playing the injured soldier is his favourite game. Doesn’t like when someone else is ‘worse off’ thank him or whatever. You take care and no more heavy lifting x
That's terrible, but reading this thread it seems that a lot of men behave like this. It's almost like they need us to be their mums. My ex husband had me treating him like one of our kids. He'd have me run his bath and all sorts. Sorry to the men reading this who aren't like this. My mum is also like this. Whatever I have, she has it but worse. If I've had 4 hours sleep last night, she's only had 3. I am so grateful to my kids for how they understand. It's funny how children have a real grasp of a situation, yet our adult partners have no idea.
1 million percent. Wish me luck I’m going to find me a real man!! Sorry I have to have my sense of humour or else I’ll lose the last of my marbles 😅
😂 the real man in my life is my horse. And my husband knows it 😂
🤣🤣
Wow! No words x
Your children sound lovely caring people. I find if people see me doing anything physical then they think I can do it everyday which of course I can’t. I think that’s why outsiders think we are faking it.
That's the problem. I don't think people quite understand that on a good day, I can walk but hurt a bit later, yet on a bad day I can't even put pressure on my feet. I can go clothes shopping with my girls one day, but need 2/3 days rest after. It doesn't help that doctors don't really understand either.
I’m so sorry to hear about this and makes me so sad to hear… My only advice is to be selfish and put yourself first, if it helps understand that it’s truly the only way to be strong for your children’s future. This is from my own personal experience.
My ex-husband, of 15 years, did nothing but put me down. I was the bread winner, with a good career. I took care of my son, whom he wanted nothing to do with. I did all the bill paying, cleaning, cooking and house repairs. He periodically had a full time job… but there were many years he didn’t, and he never lifted a finger to help me with anything.
I’ve got a blood autoimmune disease and Fibro both of which he said were fake and in my head. I even had a stroke at one point and he refused to take me to a&e as he said I was just exaggerating and trying to get attention.
After 15 years I finally realised everything he was doing was coehersive control and legally consider domestic abusive. I even work for a law firm, so I should know better…. But it wasn’t until I saw him doing it to my son that realised I needed to leave…
I confided in 2 female Co-workers who helped me pack up all my things one day while he was at work, and I disappeared and never looked back.
I’m now 3.5 years out of that awful relationship. It was hard, but it was the best thing I ever did and my only regret is I didn’t do it sooner.
I now have a loving partner who helps me everyday with things… on my bad fibro days he cooks me meals, shops for me, walks my dog… and most importantly… he BELIEVES and knows I’m in pain even when I still say, out of habit, that I’m not.
I know it’s hard to accept. I know it’s hard to do. But find an abuse support group near you. It’s not about physically hitting someone… verbal and emotional abuse is just as scarring and equally as wrong. 😢
If it helps you find motivation, understand that the longer you stay, your kids will assume his behaviour is ok… and you’ll struggle when they get older to either stop them from repeating the behaviour or from being upset that they had to experience the trauma of watching their mother go through it.
I couldn’t motivate myself to do it until I put my son first.
❤️💙 thank you x
Good morning Busymumma22 I am 72 and been married 54years. I have been poorly for most of my years as have lung problems I developed fms two years ago I am so lucky that my husband is and always has been very patient and understanding. I don’t think I could cope with life without him I am so sorry that your partner is not more understanding my heart ❤️ goes out to you and wish you well 💞💞
Thank you 🙏
I have read through this thread and recognise how the other partner feels as I've been in that position with my sick parents (b4 I had M.E. or fibro and was able physically...)I am now struggling with the chronic pain+fatigue of fibro and living very much a half life but in the meantime I have met a wonderful man, 9yrs ago!He's lovely, a widower with a kind and supportive attitude but now there's no intimacy.... I feel so sorry for him as I'm definitely not the exciting partner I once was!!! He has to cope with a partner who's a shadow of her former self and so lethargic that she rarely smiles...
Yes that is me!
And I feel so guilty...
He wants to 'fix' things but of course he can't fix my health!
The guilt makes me plan+cook every meal (at a physical cost!) but he does assist which is marvellous.
So, I feel I am feeding him... which helps me feel I am useful and we both eat well!
Otherwise, I hardly contribute!
I have to rest doing virtually zero so I plan outings for us that are rather tame where I hope he can feel there is something to look forward to... He's the driver not me!
I feel I depend on him too much and that GUILT is so hard to live with...
Adapting to being ill is hard for everyone concerned, isn't it?
I'm so sorry yr partner is not more helpful towards your health. I cannot imagine how tough that must be??? You must be run ragged with all yr family demands too?
It's a tough call between having an unkind, insensitive partner who doesn't help to being on yr own??
Neither is great!
The loneliness of both scenarios is utter pain and heartbreaking at times...
We all need help/support at times but the reality of life in 2022 is there's just not much around... and if there is it's so hard to feel OK about accepting it...
Thank you to everyone here.
The support is quite amazing!!! XxX
So sorry to read all your experiences!
After several bad relationships I'm lucky now - having got fibro and more - to have a wife who doesn't have loads of demands and expectations on me, but sees my pain in my eyes and face altho I don't let on, who was the one who pushed me to the rheum.s cos she saw I was getting stiffer, who carries bags for me which I think I may still just manage. There's a downside there - she suffers mentally over these sicknesses more than I do. I'm so sorry that she can't go out much with me any more, to eat or any kind of amusement stuff, have to "send" her out with her and my friends and family, or can accompany them for half an hour or sometimes more, she would love to travel, but finds it hard to do that with someone other than me - maybe because I also understand her best, and know fairly well how she needs me to be considerate. So on the one hand it's great and I'm grateful, on the other hand I've also had so many bad times in my life that have taken their toll and I also need to not suffer with her suffering, something I've been practicing for years, sometimes with the help of talk therapy, or at least using the help of earlier talk therapy in previous relationships.
At the moment I don't feel like trying for any advice and I hope it doesn't hurt too much to hear that life and relationships can be better. Maybe it's some kind of hope for some kind of future? But as we fibromites have to put self-care first to be able to be there for others, maybe some day you'll develop your solutions... I've needed decades to get there and it was tough work to get out of all the abuse I've been thru.
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