How do you all cope with family members who just don't or refuse to acknowledge that you are in pain 24/7 and that the exhaustion that you are feeling is not from laziness but a real thing ?
I'm so frustrated and angry that those around me expect me to look after them as I have before but don't give two figs about how I'm doing. Then they make me feel guilty when I say I can't do something for them that day.
I feel lazy and get so angry at myself when I can't finish a task or start a task. I have gout in my thumbs and constant anemia as well as fibromyalgia and I'm just so frustrated with myself and close to tears. I'm sorry for the rant and moaning, I just have no where else or no one else to talked to about how I'm not coping at the moment. I've never been one for self-pitying so this is bringing me down even further.
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Flame_lily
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Hi there Flame_lily , so sorry that you’re feeling so down.
I can only empathise with you, as the way you feel is the way I’ve felt often over the years.
Some people just think because in the past that you were the one who “did all these things”, or “why can’t you come out shopping/drinking/meeting up with friends?” They either can’t, or won’t accept things have changed, and the thing that hurts the most is, it often comes from family members or supposed friends .
I found in the end that only by being frank, and direct in these circumstances was the only thing that worked. Using phrases like “sorry I can’t do that, you’ll need to ask someone else”. If someone leaves something undone waiting for you to do it, just say “ look, it’s not business as usual, I can’t do that anymore, you’ll have to do it yourself!” You have to be firm.
It’s sad, and you’ll feel down, but you’ll find out who your true friends are, and family members usually accept that things have changed and rally round, or stop asking.
In the end, you find that the people who truly care about you, are the ones who stick around, and they’re the ones to understand how Fibro affects us, and they’re the ones who ask you “is there anything I can do to help”. It’s hard in the beginning, but be consistent.
Good luck, and keep posting, as we all on here truly understand how you feel.
Dont you ever feel that, we all know what it is and how it affects people, it makes me so angry that people dont listen to us, and that they think we are making things up, if you feel the need to say how it it affecting you, people on here know exactly how you feel and how it also affects them. there are some really nice people on here, and we are quite happy to listen and give you any advice we can, because unless you have been through it yourself you dont know.
I had the same thing and encouraged people to research and read up on the condition - they didn’t believe what I was saying, but they finally realised it was real when they looked into it.
I also bought the book “but you don’t look sick” by Bette Brown. The writer is an Englishwoman with fibro, so it’s very relatable, has useful info about things available to us in the uk, hase valuable info for us with the condition and is a great guide for those without to see what it’s all about and what we go through. Obviously we all experience it differently, but it’s a great way to help people understand.
I know I find it hard to articulate anything with fibro fog, let alone describe the pain and total fatigue.
I have been very pleasantly surprised at the amount of compassion and help I have received since people took the time to research it.
Good luck and remember - you are not lazy and this is not self-pity. You have a condition that is very debilitating and also very unknown, so please don’t feel bad about yourself. 💙💙💙
Hi flame Lily I am sorry to hear you are feeling low.
Maybe ask your family members to read up on fibromyalgia so they know what you are going through and can understand you better. As soon as I told my daughter what I had been diagnosed with she googled It straightaway and wanted to know what the cause and symptoms are ect
I do understand how you are feeling. Fibromyalgia itself can make you feel really low. I was diagnosed with this 2 weeks ago but my consultant thinks I’ve had this since 2017 after my accident but because my blood was ok no further investigations where done at the time. I myself don’t go out now socialising like I used to anymore .I’m too tired. I go to work and go home. I hope you are feeling better. Sending love
Hi Flame Lilly! Nice to meet you. you are not alone in this one. ive lost most friends because ive had to say no thank you cant do it.And truely they were dear ones. They dont get it so i have used forgiveness. Relatives feel like they can say anything? i was told 3 times that my sister wished id never been born.I was in shock. I dont even see her, yet i felt a sorrow for her being jealous of what?When i have down days and think im in trouble i realize she is in worse shape. the phrase..let them go...... helped me. the song Let It Go from Frozen i sing alot! i no longer let "those kinda people" waste my breathe in conversation....seriously...i feel unburdened now. i stand (most days) on two feet and do a 360 and dont listen to thier entire idea of what im supose to be. best wishes...we do understand.
Morning Flame_lilyIt sounded like I wrote that. I experience exactly the same. I dont know if its that my loved ones don't want to admit to themselves that I'm not the same old mam/wife/daughter/friend that I used to be. Or is that the excuse I use to myself when they are being so hurtful and not taking into consideration what I feel every day?
I'm not a whinger but sometimes I just want to scream and cry at them.
I hear you loud and clear!it's very frustrating when people don't understand you or your conditions and it's tiring even trying to explain,we beat ourselves up for not being able to do what we would like to do never mind what we have to🤦when it comes to doing things for others I've learnt to bite my lip and say I'm sure you can manage,or instead of no or sorry saying not possible right now and repeating as no sounds harsh and sorry sounds like your apologising for being too ill to help them never mind yourself! Your in a place when you may sound cranky for saying basically do it yourself but at the end of the day your in bits daily trying to repair and maintain a day in your life where you don't want to give up!time to be a bit more team YOU!😎🌈
Thank you all for your kind words. It brings tears to my eyes knowing that there are so many of us just trying to get loved ones to understand what we are going through.
Hi flame_lily as so many have said it's as if I wrote those words ! ive lost what I thought were real friends and it hurt so much but I've got over it now as I've wasted too much time grieving for them and beating myself up about not being able to be the person they want and realising that they were not real friends and the family don't get it but they do try and my son who I adore just doesn't want to admit I'm ill as he then has to face the fact I'm not always going to be around and he now helps as much as he can which is a true blessing as for other family members I'm now at the point of not caring my mother was the worst but she wasn't a nice person to me even before I got ill so I should of expected really but she's gone now so I don't have to deal with the daily snipes any more, I'm also lucky in that I'm blessed with a great husband who says he can tell in a morning what sort of shape I'm in ? So he says he knows if it's a good bad day or a bad bad day as I seem to have constantly daily pain and problems and don't have flares I just have it constantly aswell as other conditions that also cause pain so I'm stuck in it constantly battling it every day but I try to do what I can when I can and not let myself get bogged down in it but some days you just have had enough and want to cry and ask why me but then it passes and you get on with life again I've found the ones that only truly understand are on this forum as they are living through it to so try to remember you are not alone we are all here to help guide and support each other even if we don't like what's said it's still a valid opinion and is worth reading and thinking about as it does affect everyone differently there are many things that are the same like this for example so just be consistent and tell them no sorry I carnt and don't feel guilty just let it go as your only beating yourself up when it's jot you it's your body and this horrible disease we all have if you want to chat anytime you can privately message me icdont mind at all and remember when your feeling alone that you are not! Not anymore as we care and understand and will listen and help as much as we can, I to I'm going to look for the book mentioned up in another comment as it sounds very useful in making others understand and even ourselves to some degree, so stay strong my friend do what you can when you can and if that's nothing then so be it look into finding a hobby you can do sitting down that you can leave and pick up again when you feel upto it as I think it will help calm your mind and help you forget the hurt your feeling at that time and when you finish it you get a sense of achievement that is so good for you Take care
Stay strong and remember you are not alone not anymore
Keep in touch and keep us updated as to how your doing
sweetheart, i know exactly what you mean, i first started with fibromyalgia and chronic fatigue in 2002, when it has been really bad i have had comments like, oh have you got that again, you need to see the doctor about it, it shoudnt happen twice, yes of course you have, oh mom i dont want to know, when the chronic fatigue has been really bad i have had so many people say that they are tired that day as well, i had one doctor say to me last year - everybody feels tired and gets back ache from time to time- i have a full spine MRI in my medical records which shows that i also have all of the nerves in my neck are mangled and that i have 5 vertibrea in my lower back that are causing disks to bulge, touching each other etc (from 27 years of lifting my mother who was paralysed from the chest down and couldnt stand at all, from the bed to the wheelchair, etc) , With people like this i have over the last 20 years of having firbromyalgia, Chronic fatigue, spinal damage, mangled nerves and since the diagnosis 2 weeks ago, now vertigo as well (i really dont need anything else!!) the best way to deal with them is to ignore them, and just dont tell them, and when they start complaining about having the flu say, i am sorry you have a cold, if they say they have hurt their hand, say everybody gets finger ache from time to time, if they say they have a migraine, tell them to take an asprin, they will soon learn.I had a lignocaine infusion at the pain management clinic, i had to go into hospital for the day, they administer this through a syringe driver and somebody has to sit with you for the hour that it takes to do it, they have to take you blood pressure at the beginning every 3 minutes, from about 20 minutes in every 5 minutes. i was in the anti-room of one of the theatres, the consultant was in the theatre doing other proceedures to other people, it got to about 40 minutes in and the nurse who was with me said i will be back in a minute, she went into the theatre and came out with the consultant who kept asking me if i felt ok, i didnt feel any different, they were both really concerned. about 48 hours later i started to feel really weak and couldnt do normal everyday things, i had enough energy for about 10 minutes aday, my son phoned me to ask me if i could do the school run twice a day, i told him how this had affected me, his response was, yes mom, but we would really appreciate it, and you could rest after it, they wanted me to do the school run twice a day so as to not put her mother out.
i had this in 2016, by 2020 i had managed to get it up to 1 1/2 and on really good day 2 hours a day of normal daily activity, then came covid, i phoned my GP as i had read somewhere that one of the long term effects of covid was chronic fatigue, and that as i already had chronic fatigue should i have the vaccine, as vaccines have a small dose of the actual illness in them. he said it would be fine, I had it, and what do you know, it caused my chronic fatigue to go haywire, since having it and still today i can now only do about 20 minutes a day of normal daily activity, nobody gives a dam, because i dont look ill they think i can do what they do.
it is no good trying to explain to people they really dont want to know.
i printed stuff off the internet which gave a complete explanation of fibromyalgia and chronic fatigue for both my sons to read, neither of them did and they just threw it away.
sorry for the rant, but i know exactly what you mean, and you are going to have to try tough love, no matter how it may hurt you. you sound like me, when people ask you to do something for them you do it regardless. if the shoe was on the other foot, they wouldnt do it for you
That's exactly true, they wouldn't do things for you if you was to ask them or they would even offer to help. I went through womb cancer on my own, every appointment, full hysterectomy and radiotherapy on my own. Family members knew what I was going through but no one offered any help and my father who I was helping because he has illnesses was only interested in when my radiotherapy would be finished so he could tell the transport people that he didn't need them anymore so I could take him to his appointments instead. When I told him I just need a week or 2 to get myself right after my treatment he flat out rolled his eyes. I should have walked away fight then. Not sure why I didn't. I'm just sick of fighting people, it's to tiring on top of everything. Everyone who commented on my post has gone through what I am going through and it's so disheartening that we all have people like these in our lives. I wish we didn't.
bless you sweetheart, dont give up, you can always come here to us, although we cant be there we do understand and are with you in our thoughts, and will always listen to what you have or want to say, stay strong
That's a really awful thing to go through on your own,sounds harsh but in the recent past I have cut ties with people I'd rather not deal with anymore,replaced them with some supportive friends instead,it's my life so I think I can do this and not be a person to be the brunt of things,I won't miss them or the drama I constantly heard,taken a long time to get to that though🤔😓🌈
I haven’t had a diagnosis yet, so I have problems understanding my own inability to do things sometimes. My GP agreed that I had many symptoms which might add up to fibro, but sent me to a rheumatologist who was prodding me at pressure points to decide if I had it, and diagnosed ‘chronic pain syndrome’, which doesn’t explain to other people that I have an illness that’s outside my control.
I’ve had to realise that there’s nobody else to tell me whether I’m well enough to do things, I have to be guided by my awareness of my pain and fatigue. I’ve been left out of things because I’m not as active as I used to be, and I’ve had to completely change my old approach of pushing myself to do things to taking serious notice of any feeling of tiredness before I go out. I recently went for a lunch date with a friend who is always rather hard work (she doesn’t do much listening), and I was too tired to do very much for about a week afterwards! I knew it was going to be hard work, but I tried to ‘power through’ and I just couldn’t do it.
I now stick to sending apologies if I feel too tired to do something, with no explanation. Certain family members have given me unsolicited advice, which I’ve ignored. I know quite a lot about fatigue from when my son had ME, and I try to pace myself like he did, which often meant resting up before something he wanted to do.
The thing that bothers me most is that I fear becoming boring - talking only about illness - and that I can be a bit snappy if I get tired. I don’t want to be a boring, cross old lady that nobody enjoys seeing!
Hi I think the majority of us have been on the receiving end of this type of behaviour. It can really drag you down. Mostly now I just don’t much bother with the worst offenders. My son-in-law tells everyone that it ‘must be nice to sit around all day and live on benefits’. He’s an idiot. He really can’t see how much pain I’m in, how much I miss my job, which I loved, how much I miss just going for a walk. Some people will never understand, or even try to understand how tiring it is to be in pain 24/7. And most people can’t imagine it.
I hope you have good days soon.
“Ignore the ignorant” was a useful phrase my grandma taught me x
I get this from my mother. She's elderly now but a friend of hers has the same condition and doesn't work or do much. She's always saying what an awful condition it is then in the same breath asks me to carry half a ton of water up 4 flights of stairs for her and expects me to service her car and generally run around after her constantly. Then get guilt tripped saying my dad who has no passed away would expect me to look after her. She is very sprightly for her age and drives. She's also retired and has all the free time in the world. I generally work 6 long days a week in a very physical job that leaves me utterly broken.
we all have that happen , its best to just not say anything it just fuels the fire . People in good health will never be able to understand what constant pain is .
Hi Flame_lily, I sure can relate. I’m sorry you are having to deal with all the stress from family not understanding. I know this is a debatable subject but when I entered the EpicGenetics study and they sent the results of the RM/a fibromyalgia blood test. It just validated that fibromyalgia is a real thing and this piece of paper with the FM/a results. I made several copies of it. I don’t remember what I did with the copies but am sure I sent them to family and doctors. It is hard living in pain 24/7 and fatigue to the point of experiencing it on a cellular level. Remember you are not alone. Hugs 🤗❤️🦋💜🕊
So many can associate with your feelings about insensitive
relatives. I have enough trouble just taking care about my most basic
needs suffering from fibro pain, constant fatigue, and weakness because
of heart condition, I could not manage anything else. Please, never, ever call yourself lazy, I am sure it takes superhuman effort of will to do what you do for others when you body screams let me rest!
I remember when my family was younger, and had to work serving them all all the time, in many different ways, exhausted and in pain. I decided
to go on strike for few days, just did nothing. nothing at all in hope that we
can talk about how we can share some tasks.
Guess what. No one even noticed that house was in a mess dishes in the sink etc, so who gave in. Yes.
Families are deaf and blind, just as they are now when they send me huge
bouquet of flowers etc, but no one offers any help when things are falling
apart since I feel too unwell to cope. They still pretend not to notice anything is wrong, Thank God for helpful friends.
Please, never think of yourself as lazy, you are just not feeling well
I understand so, so well how you feel. A close friend even once asked me about when I am going to 'stop pretending' to be ill, and go back to work... I think its cos fibro often can't be seen by others, they can't understand it. We look 'normal', and not that disabled, so it is very hard for them to comprehend the pain we are in. I wish I could help, but just wanted to say you are not alone. And as somebody suggested, maybe giving some written info on fibro might help a little bit at least.
I completely understand. I don’t think my husband understands the pain I’m in. I have gout in my joints fibromyalgia, and hips that are offset because one leg is longer then the other. I constantly forget things, in pain and fatigued so much and nobody understands my conditions. I also have plantar fasciitis in my right foot. I’m glad to be on here to be able to confide in others who are facing the same issues, it really helps me feel a little less insane. Keep your head up.
Hi Flame Lily I know just how you feel I’ve had my family turn their back on me when I could not go to my sisters wedding because of chronic pain was unable to walk and had tremors through out my body, my niece rang me and was a real bully said her friend had fibromyalgia and that I was exaggerating my symptoms she said some very uncaring mean things to me and then they all blocked me on face book. I’m better off without family like that. Two of my friends have been very understanding. It’s a very debilitating disease which steals your freedom and life.
This is the worst part for me, it makes me feel useless and worthless, like I only had any value when I was waiting on everyone else all the time. My dogs are the only things that make me happy, but now I can't walk them my husband refuses to and says I have to get rid of them instead of just taking them out himself. He'll get a shock if he pushes that point, I'd choose the dogs over him any day of the week!
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