Family doesn't understand :-(

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Family doesn't understand :-(

Postby Karenlynne » Thu Mar 06, 2014 7:37 pm

Hi everyone,
I've been diagnosed with fibromyalgia this week and my family, in particular my mum, have pretty much ignored it!
I've even put together a fact sheet in simple terms from various sources and my mum said "it's not life threatening so you just have to get on with it! My sister hasn't even called me this week to find out how it am.

I've been pretty overwhelmed with what has happened this week with the diagnosis and although it explains a lot of what's been happening over the past few years, I'm still feeling down.

Today I spoke to my mum about why she wasn't being supportive and that I've been worried about my condition. It turns out that because she had breast cancer 20 years ago, she doesn't think my diagnosis is important. As far as she is concerned she feels bitter because there was a complete lack of support when she was ill by my dad and others. I was living 200 miles away at the time but travelled up as often as I could.

Has anyone had problems like this with their families?

Karen
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Re: Family doesn't understand :-(

Postby sensualitykj » Thu Mar 06, 2014 7:54 pm

Hey Karen, sorry to hear you aren't getting the support you need. Unfortunately I can relate, I had a car crash 12.2 years ago and got diagnosed about 4/5 years after. my brothers never contact me, and my parents make comments which make me think they don't really understand. Maybe it's because they have both had cancer and both experience back pain etc, however don't experience fatigue which I find the hardest to deal with! Finding a support group where you can talk to people helps. When I'm around non disabled friends I feel like I'm constantly having to explain myself and justify why I can't do things. My disabled mates understand so I can just get on with having a laugh! Good luck with your journey ahead. Kirsty :-D
Be in the present moment. The past is a memory, the future isn't here yet. So enjoy the NOW!
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Re: Family doesn't understand :-(

Postby Garyl » Thu Mar 06, 2014 8:05 pm

Karen, my mum understands what i am going through even though she has her own health probs, It is a horrendus ill ness when i was told by a Rheumatologist some 10 years ago he was visibly shaken by it, he was also treating my mum and asked her how i was coping she told him she did not know as i was playing it close to my chest, he told her all about Fibro and she told me what he had said.

Try and make your mum understand. Is ok you have friends on here that understand which is half the battle
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Re: Family doesn't understand :-(

Postby Miz3 » Thu Mar 06, 2014 8:09 pm

Hi I hope you eventually find a way to cope with this. I recently got diagnosed after a very long time of always feeling ill and suffering depression. I thought that now I have a diagnosis the family would all be supportive and understanding. WRONG nothings changed they still barely have time or energy to be helpful or supportive. So basically expect nothing that way you can never be disappointed. This kind of illness is tough on partners and kids too. My only advice is that forget everyone else n their hang ups get on with your own life. Take it one day at a time be kind to yourself celebrate the smallest of achievements and just do the best you can. Hope things get easier for you.x
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Re: Family doesn't understand :-(

Postby maxinevalentina » Thu Mar 06, 2014 8:44 pm

Uv been the same I got diagnosed almost 2 months ago and I'm 21 .
And my family haven't supported me at all and I live with them all
Iv had to turn to my mates because on one else will help me .
And coming on here has been great all the advice Bern helpful
I hope u all the best xxx
you'll never know how strong you are untill being strong is the only choice you have
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Re: Family doesn't understand :-(

Postby JDWench » Thu Mar 06, 2014 8:49 pm

I come from a "suck it up and get over it." Family and although I've had painful joint hypermobility which was diagnosed seven years ago I never really showed how bad it was, until I had sciatica and the unbearable sensitivity and pain in my back, ended up seeing a rheumatologist in feb (appointment had been booked in October regarding my hypermobility) he diagnosed fibromyalgia which came as a relief then a great depression. My mother and my usually selfish family have been amazing! My partner not so much but he's still adjusting too. The only place I have issues is work, today a customer requested I be sent home because I was crying in pain but couldn't leave because I'm not allowed to go sick. Try and talk to friends about it, you have us here or even see a counsellor even if it's to get stuff off your chest. If one support network fails build a new one. :)
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Re: Family doesn't understand :-(

Postby Laus2002 » Thu Mar 06, 2014 9:59 pm

The only advice I would have is give them time. When I was first diagnosed my mum basically disappeared for two weeks which as we are relatively close, was unheard of and deeply upsetting, however she soon came around and while not perfect, she tries her best to understand my illness and it's limitations. As difficult as it us for us to understand an illness that seems to have no rhyme or reason, I should imagine it's even harder for those not suffering the symptoms themselves to understand why we can sometimes do certain things and other times not. I know it's hard, like I said, my mum did it to me and I still feel hut over it, it felt like she abandoned me when I needed her the most, however we have come through it together and hopefully you will too. Good luck with everything xxx
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Re: Family doesn't understand :-(

Postby littlemac0191 » Fri Mar 07, 2014 12:21 am

My mum has Fibro and my husband has ME, neither one thinks i am as ill as either of them, so technically I am invisible. My close friends are great, they dont really understand but know me, aquaintances are oblivious and one in particular is always calling me lazy, I was really upset for a long time but I try to ignore him now. I just try to get on the best I can and be grateful that it isnt life threatening, even though most days I feel half dead already. My first post so be gentle with me, feeling a bit fragile today, cheers Karen
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Re: Family doesn't understand :-(

Postby sensualitykj » Fri Mar 07, 2014 11:02 am

Karen (littlemac0191) Welcome to the group, I think you'll find us a friendly and supportive bunch! :-D I can appreciate what it's like being around other disabled people who think they are more disabled than you! I sometimes feel like this person thinks it's a competition, no matter how I say I feel, they have the same complaint but worse! At least I can choose not to see them when I don't feel strong enough to deal with it. I'm sorry to hear it is both your mum and husband. I hate people thinking I'm lazy because I was SO organised and active prior to my car crash, like you said you just have to try and ignore some people!. Kirsty
Be in the present moment. The past is a memory, the future isn't here yet. So enjoy the NOW!
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Re: Family doesn't understand :-(

Postby TheGingerJedi » Fri Mar 07, 2014 4:24 pm

Hi

I had the same thing with my parents and ex partner. none of them understood the things i would be going through and always told me that its all in my head and i should return to work and stop complaining.
Recently my parents have made some new friends thou and one of them suffers from a condition close to FMS and now understands what i go through and always ask how i am, my new partner is totally understanding of the condition, he even accepts the mood swings and lack of energy that this condition brings and supports me as much as he can. all i can suggest is to sit the ones in your life down and really talk about it, explaining the reasons of the condition and go from there, tell them you need there support and love, explain the situation your in. Maybe take your partner of parent to a doctors visit and talk about the condition with them both, that worked for me with my mum.

I honestly hope you do get the support you need as all sufferers of this condition would tell you not to go through this alone, you need your loved ones around you and the support that they can bring to the table.
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Re: Family doesn't understand :-(

Postby KesinGateshead » Tue Mar 11, 2014 2:14 am

Hi Karen,

Terrible response from your family there. As for your Mum, how old were you 20 years ago? Quite young, I'd imagine. Your Mum is right about one thing, fibromyalgia isn't life threatening, but it is definitely life destroying. Constant pain, difficulties from associated conditions like severe depression, CFS/ME and IBS to name a few and the fact it's still not even believed by some doctors. I'm really glad your Mum is in remission, but at least she has had remission, we don't have the luxury of fibromyalgia going into remission, clearing up or being cured. Fibromyalgia is constant and unrelenting for life. All I've done is bombard my own facebook wall with information pictures and my Mum and family started to get the hint then.

Not much help, but hopefully your family will come round.

:-)
Kes
xXx
:-)


Dx with Fibromyalgia 06/06/2013
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Re: Family doesn't understand :-(

Postby foxyking » Mon Mar 17, 2014 8:17 am

hi all,
i know exactly how you feel,i have M.E/Sciatica/fibro plus other illnesses,my parents told me the other day to "man up and get on with it!"
i have 2 sisters also that thinks they are drs who know it all,if 1 of them gets ill my parents are round their places quicker than lightning,i'm the black sheep of the family! :(
think of yourselves,dont worry about others,they are not worth it!
:-D :roll:
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