Family doesn't understand

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Family doesn't understand

Postby Bellatrix18 » Fri May 30, 2014 5:24 pm

I'm feeling a bit down at the moment at how my family are reacting to the news of my recent diagnosis. They act like it's nothing, and if I'm having a bad day/flare up they look at me like I'm crazy. They don't know what fibro is and don't have the time or effort to ask me. If I explain it to them they seem bored and disbelieving.

Yesterday I was meeting up with my mum and suddenly doubled over in pain as I also have costochondritis and my chest had intense shooting pains in it. My mum looked at me as if I was crazy. When I explained what was happening she continued to chat to me about something totally unrelated as if my pain was non-existent. I couldn't breath in and was hunched over, but she just happily chattered on as if nothing was wrong. If I say I feel fatigued because of FM one of them will say 'I didn't get much sleep last night either' as if I'm just a bit sleepy. It's like they're trivialising it all the time.

I know not everyone can understand what it's like and I am SO lucky to have a supportive, loving partner that makes up for my family's disregard, but sometimes I feel so angry that they're not there for me. I try to hide my symptoms from them most of the time because I get such a negative response I'd rather pretend it wasn't there. I'm not someone who want's to talk or think about FM all the time and am always trying to have a positive attitude, but a bit of understanding and support from my family would help me, especially since I'm having to come to terms with the fact that this pain will probably never go away.

Has anyone else got experience with how to cope with people who just will not understand whatever you say to them?? :-x I don't think they're ever going to be supportive. I just want to not be upset about it any more!
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Re: Family doesn't understand

Postby Garyl » Fri May 30, 2014 5:40 pm

Hard one this, i am lucky as my sister is a matron at one of the Hospitals in county, she knows about Fibro and has got me more info on the illness and explained it to my mum.

She is understanding as are most of my friends , your family need to google fibro so that they get to see you are ill and that fibro is the most debilitating illness there is , myself have been up and about since 7 this morning and have had 3 doses of pain relief, and have dosed off 4 times in the computer chair.

Hate being like this and you are so right most people do not understand the illness, as i said my sister has helped my case as has my gp and practice nurse i see for asthma.

If your family knew the facts they would treat you so different and give you the care and help you need.

Hope you can make your mother see what you have and how it effects your day to day living wish i could help and make them believe you
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Re: Family doesn't understand

Postby humphreys » Fri May 30, 2014 6:01 pm

Hi. I don't know if my family fully understands my Fibro, one of them always has something worse than me, but the other seems to know how I'm feeling, she's seen me walk like an old woman, but like one of my old aunts once said, when people come to see you, you don't want to be moaning all the time, or no one will come again. I just try to get on with it really, my work is suffering now because of my Fibro, I want to work 2days now instead of four, but it's going to be hard on the pocket, but what else could I do.

Going back to my family, I am the youngest of four, and they still think I'm a kid and shouldn't be like this. I just try and carry on as usual, sometimes I just want to ring them and tell them how I'm feeling, but I feel so stupid as there a lot older than me.
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Re: Family doesn't understand

Postby Librarychick » Fri May 30, 2014 6:46 pm

Really feel for you lovely. I'm quite lucky that my 4 adult children and husband are supportive but t did't happen overnight. When I was first diagnosed I wasn't as bad as I am now(having to give up work) but they have always been there for me.

My mum however is always going to be sicker than I. Whenever I try to speak to her she just goes on about the trials she has had blah, blah, blah,

I just take strength from those who share with me. My beautiful children, my grandchildren and the lovey support group on here.

Just a thought though, there are some amazing info packs available now. Is your mum n FB? Start posting things and educate her about the illness.

Stay strong! Enjoy your lovely partner.
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Re: Family doesn't understand

Postby lovesbubbles » Fri May 30, 2014 11:33 pm

hI someone pointed me to here viewtopic.php?f=2&t=4732
I read it, emailed it and printed it out
Hope it helps

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Re: Family doesn't understand

Postby wendielou » Sat May 31, 2014 10:19 am

Hi everyone I to struggle with this and to honest I find this harder to deal with than the fibro. It breaks my heart also when family trivialise this as at 39 do they really think I would choose to live like this? I am going through a spell of not sleeping at the moment so am exhausted beyond belief :sleep: . I have been told at least a dozen times how family members feel the same as they haven't slept well due to being muggy and I just want to scream :yikes: . Yes you may be tired but at least you can still move and function!!! But I don't as I feel I am forever moaning about how I feel. The last few days I have had hand, legs and body tremors with a twitching head which is great as my only pleasure when like this is reading. When I mentioned it as a concern and a new symptom I was told it's probably because I am taking too much oramorph aaaarrrrgggghhhh :evil: . So wish people would understand more and show more compassion. Much love to you all xx
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Re: Family doesn't understand

Postby Kiara » Sat May 31, 2014 9:11 pm

I have every sympathy with you, I lost my daughter simply because she couldn't understand my illness , she accused me of not wanting to be in her and my grandchildrens life and for not making an effort to visit them. I've been housebound for 3 years and i have used a wheelchair for the past 18months . She has hurt me more than she will ever know and my poor husband has to cope all on his own with no support from my family . It gets to us, its soul destroying but stay strong , hugs xx
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Re: Family doesn't understand

Postby lisaward127 » Mon Jun 02, 2014 1:56 pm

I always think of this letter, it helped me to show my family and friends how I feel.(I didn't write it but have permission to share from FB friend) viewtopic.php?t=16583
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