Do your family/friends etc., understand fibro?

[Sue15197]

I appear to have a family that doesn't understand fibro at all, even though I have sent them websites to visit. At that time, I was on AOL and could clearly see who had read the emails, none of them did. Made me feel as though they didn't believe me

[Claire2]

Not really, they say they do but how can they, we are the ones going through this day after day, week after week, etc. Its hard to explain exactly how we feel and how the pain, fatigue etc affects us. I went through a time when I was not believed until I had a bad week then the person concerned couldnt say sorry enough. Maybe one day others will understand but until then we will all have to support each other. On a different note if you can find a support group near you please join, its the best thing I ever did. Good luck

[Hidden]

I understand that this was called fibrositis many years ago - when I was a kid - and I wondered how they went on in those days with no meds. It must have been awful.

[Hidden in reply to Hidden]

Sorry, forgot to answer the original post lol. Doh. I haven't found anyone who understands it yet.

[PaulaPortela]

Hi Sue, I agree with Claire they don´t I try for so many years and nothing when i was worse my son or my husband try to understand they make me question about fibro but when i start to explain i can see in their faces that they simply don´t, and if we think we can see we haven´t a broken arm, or leg it´s everything ok with us. when i have been diagnosed with fibro i told my family but it seemed that they thought the doctor had arranged this disease just for i stop thinking that i´m really sick, so i stop talking about and when some one ask what´s wrong with me i simply say i don´t feel ok, that´s why this group is so important to me.

[Hidden]

Hi Paula, I can see it in faces when I try and explain too, they either glaze over (look bored because they don't understand) or say oh I know someone who's got that but they have no idea whatsoever how we feel. I was only saying the same thing as you yesterday, you can't see it - like a broken arm or leg - so people don't understand. People say hi how are you and today I've said oh y'know, usual aches and pains and there has been no resopnse whatsoever so we may as well say I'm fine thanks.

[Hidden]

Hi everybody....why don't you let friends and loved ones look at this site and then they can read what everybody writes. Maybe it would sink in then??? How can you not be compassionate and understanding about some of the items written here???

[Tiggerooo in reply to Hidden]

Hi, Im newly joined to the site, but have 5 chronic illnesses, one of which is Fibromyalgia which is very debilitating, extremely painful, and something you wouldnt wish on anyone and I think your idea is a great one - maybe if family took the time and the interest to look further into it especially reading blogs on here, then they may be more inclined to see that when we try to put across how we 'are' feeling, and its another one of the 'invisible' inflictions/illnesses, when they read what others have written they may be more inclined to actually believe it and want to understand it more. I do think these sites will be a great help to sufferers and their families (fingers crossed) - Ide be interested to hear others thoughts too. Hoping everyone on this site isnt suffering too badly tonight. Sleep well folks

[PaulaPortela in reply to Hidden]

Hi Nicki, I have a book "fibro and me" is Portuguese and i don´t know if it was been translates or not the was writing by a DRª who explains the symptoms and the medicines and a patient who tells how hard is lived with fibro but the thing is when i talk with my family and friends I show them the book,( because it wasn´t easy to explain everything) and they simply say" ah ya should be difficult and that´s it. If on tV they had some programs were people can came and talk about fibro, but i don´t know we need to see to believe and how can someone believe that we are so in pain if almost of us as a good look, but anyway i hope your strategy goes on and we start to be more supported, have a nice day my friend all the best.

[Barbykins]

Only my sisters as they both suffer from fibromyalgia and the various other illnesses associated with it. Other people either don't or won't listen - they have already made their minds up to the fact that you look well, therefore you are well.

[chorley]

HI i am very lucky my wife & family all understand about my fibro, and most of my friends understand thanks to this site as i have sent them all links, whenever anybody asks me what Fibromyalgia is i just tell them its like cronic fatigue syndrome exept worse, i then tell them that it quicker for them to google it than it is for me to explaine LOL

CHORLEY

[jellie]

I think my family & friends are trying to understand my Fibro, I was only diagnosed with it last month, so I've had to talk to them about it, but I guess no-one will truly understand unless they suffer from it themselves.

[kellydavies9]

none of my family understand fybro, they just seemt o fink im faking and being lazy, i wish tyo god they cud feel how i feel eveyday, all i wanna do is sleep, and god help me if ive done too much the day b4 cuz i bloody kn0ow about it

[coops079]

I have the same problem, my wife has some understanding of it and gets very frustrated when i cant do things. The rest of my family and children dont understand it at all. i try my best at doing thing things with the kids especially the younger ones knowing that i'm going to pay for it later. Sometimes i wish that they culd take it from for one day just so they know how it feels

[Hidden]

As much as they try, (the really do) i don't know if they do fully. When i have a face full of blisters (reoccurring facial shingles) its like "what can i do" "do you need anything" "bless ya, rest up take it easy"( not that i want sympathy, just understanding) , but when cleared its like they think we cant see her pain,shes must be back to normal with her aches and pain. Not sure they understand the intensity.

What i find the hardest to explain and for them to understand is the fatigue. "Why are you so tired, you haven't done anything" I just smile sweetly and think i struggle to understand why!! So can i really blame them, if they don't?

This site has been amazing for me, helps me to stay positive, informed, and to talk through with people whom truely understand.

The blogs are good to get things of your mind, we are all different and suffer in different ways, but the common link is fibro, which my loves ones don't have so don't think they can fully understand.

Take care all.

[ZonaB2]

I have been blessed with an incredible husband for 32 years. For the last 25+ years, we have dealt with my fibromyalgia together. For 16 of those years, I was the sole wage earner for the family and the fibromyalgia went wild with frequent days of misery followed by weekends of incapciation. Now, our three children are grown, two are married and one has given us to beautiful granddaughters. I count my blessings often.

I do however "pay the price" when we visit the grandchildren. it involves a six hour car trip each way. We generally leave after work on Friday and return in time to go to bed on Sunday. Even though my hubby does all the driving, I am still sore and achy from handling the grandbabies and going up and down the stairs. By the end of the work day on Monday, I am ready to sleep at least 12 hours for the next several nights.

My children have very few memories of my without fibromyalgia. So they always knew that "Dad would be there...Mom will if she feels up to it."

My extended family has more trouble understanding. They live out of state. We see each other only once or maybe twice a year. They have never lived with me since fibromyalgia began running my life. Do they "get it?" No. Do they want to "get it?" I think my mother and sisters probably want to understand and do...to the best of their ability...as limited as that is.

Friends and co-workers are another story completely. LIttle to no comprehension about the nature of fibromyalgia there...which is particularly sad when you consider that I am in the healthcare industry!

I am glad to find this community.

Zona

fibromyalgianervepain.com

[FionaP]

I have a sister lives only a few streets up from me, another a few down and my mother only a few minutes away too. When I was diagnosed I did research and bought a book. Offered it to them so maybe they could understand and help me understand what was going on. They have never opened the book and glaze over when I speak or moan. I move home in 2 weeks and they offer no help.

I so wish I had been given some idea at the diagnosis 8 years ago that it would get this bad. I could have sorted out this big house and moved while I was able to do so myself.

It breaks my heart that they don't want to know, when I was always the one they came to for help and support. Makes me even sadder that if my nephew buys this house my sister will be here at least twice a week though she is always too busy to pop in or help me at all.

This community is a life line. To speak with others who know you are truly suffering is a comfort and the advice is welcome & priceless.

[fibrolou]

I have a very understanding husband , perhaps because we are so close he can see how fibro affects me.

My mum is trying to understand and although supportive she always comes back to the same thing, if you got yourself a job your mind would be taken off the pain and i would have less time to think about it.

I worked up until 8 months ago when i pushed myself so hard i could no longer physically or emotionally cope.

[steve233]

i am lucky as my wife understands fibro and she is a real gem at looking after me and deserves a medal as there is nothing much i can do about the house now without paying the price in pain.

[Sue15197]

Can I say how nice it is to hear from the men on this subject, great to hear from you, thanks, {{{hugs}}}

[Hidden in reply to Sue15197]

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[Hidden in reply to Hidden]

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[Hidden]

my husband is very concerned but the impact on our lives have removed a great deal for him too re socializing with friends and family, reduced sex life and not easy to share bed with me due to disturbances. it reduces him to tears sometimes too. but no matter how understanding it also causes frustration and resentment in him too. we both understand neither of us ask for this. sometimes i feel he and my children would be best off without me.

my children are scared by my demise and the ridicule and undermining by the medical world. they wonder if it is a mental illness sometimes i can tell xxx

we do all love each other, but there are few saints walking this earth.

[Kerry29]

Hi,

I just wanted to say don't worry - you are not alone on this one. I am the same as you.

[C_M_B]

Before I was diagnosed, because the doctor's couldn't find anything wrong with me, my family was beginning to think that I was lying and that I just had to get up off my butt and do things.

Now that I am diagnosed, things aren't much better. My dad, though he always believed in me even when the rest of my family didn't, keeps telling me I just need to "push yourself through it". Sorry, but some days that's impossible. I can do a lot of things, but I can't try and pull off the impossible. It sucks horribly, and dad oftentimes wonders why I DON'T talk to him about things....it's 'cause he doesn't understand and he doesn't try to. All he's trying to do is "fix me" but that's not possible. My other family members either don't know, don't care, or they have the same mind set as my dad.

It gets difficult and at times painful, but I just continue to keep my chin up and go forward.

I'm lucky, I have a few friends who understand. I have other friends who don't, one of them even told me "You shouldn't complain, I know this..." and proceeded to tell me a story about a young girl who was dying from a certain disease.

Yes, it's frustrating when those you love don't understand but it's okay. It's a hard thing to deal with when someone has a chronic illness, it's easy to understand the nature of it but an entirely different story to understand how the person is exactly affected by their symptoms. And I don't need them to understand to be happy, I'm happy with how things are. Yes they could be better, but such is life. I am happy despite it all.

[C_M_B in reply to C_M_B]

*Gentle hugs to all*

[jazher]

Hi, I have quite a good supportive family as we all have different illness between us.

I am abugger for just getting on with it as much as i can, take my pills on the quite from some people too.

When i have a bad day though it seems really hard to get through to people that i am bad everyday, but when i actually moan about it it means i am really suffering.

I have a friend that has the very same symptoms as me but its looking like she has MS, so we are always there for each other.

One of my friends looked really ill the other day and i asked if she was ok, and she said i am not complaining to you as if i had what you had i wouldnt get out of bed, which is nice she actually recognises that i am bad but she knows i just get on with it.

I dont want sympathy, i just aknowledgmnet( sorry cant spell lol), that i struggle more than most people to get on with daily things.

kel xxx

[jolee]

my husband is very very understanding at all times, but my family see a lazy mother and that dad does too much. If i mention to a friend that I am aching, you can bet they say they ache more, so I don't mention it anymore You have to have it to understand it sadly.

[Hidden]

althought i have a very understanding daughter who is a nurse and a hub that tries i still find it hard, i suppose its because i have had so many other medical problems in the last 5 years that its the norm for me to have something wrong,lol i had to go to phsio for a fractured clavicle which is not mending so is needing surgery and she says have you had any major ilnesses or surgery in the last few years, i (smiled) and said, yes a few i have just beaten breast cancer and 5 surgeries,to get rid of it i have recovered from 2 joint replacements, needing 3 surgeries, had 2 surgeries for retinal detachments and then another for cataract, diagnosed as needing hip replacement and spinal fusion wich is on hold and oh yes forgot am now diabetic and have eye problems, but apart from that i am fine oh and i also have fibromyalgia, the look on her face was unreal, how do you manage she asked, well first you find forums with people who have these problems so that understand what it is like and you go from there and take it one day at a time

, i am fine its just my body letting me down :0)

[Woodhouse16]

I think that's one of the worst things about this dreadful chronic pain condition as lots of people think if it's not obviously visible then there's nothing wrong with you and getting people to listen understand and support you is very disheartening waring plus the feeling of always having to make a point that you are always in this pain always feel ill ect becomes another of one's everyday battles!.. fibromyalgia is a daily battle for sufferers on every level and changes your life in many ways which people who are not suffers need to understand its not something you enjoy having and feeling like