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family don't believe cfs
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family don't believe cfs

I have been suffering M.E (U.S. CFS) for 20 years. Bedridden for 12 years. Now mostly housebound, can't walk in the street. Family Occasions: can attend sometimes if good day.
Everyone has been very supportive but now they've all been talking amongst themselves and decided I only think I'm still ill. " We've read loads of stuff and no-one has it for that long, you're just used to being ill.
Have two grown up daughters, 30s, 3 grandchildren, one sister and a very poorly mother of 90 who lives with me. One second husband, 30 years together, one ex Jeckyl and Hyde. Eldest daughter BPS, middle grandson Aspergers. So I have no stress whatsoever. Not.
There has obviously been a burning of telephone wires this week. so far I've had 3 confrontations and a phone call teling me I've got to try harder (Feel really rubbish this week as it happens). Usual quote "I get so tired but I have to get up and go to work".

I feel like nothing on earth anyway, so thanks. Well done. I am an intelligent person who loves life, my profession and   going out, plus creative leisure pursuits. (Sorry about typos, tired).

I've just told them who would be mad enough to want to stay in 24/7, spend half the day resting, and not do all the usual mum and nanna things unless they absolutely couldn't? I have never taken my precious grand children  out in their pram, to the park etc. Who would willingly miss alll that? Falls on deaf ears.

I am so miserable and frustrated and, if i wasn't so tired, I'd feel so angry! I leave copies of the Afme around, cut out  newspaper articles and stick them on the wall but no-one bothers to read them. My husband gets fed up with the condition sometimes but he's very supportive much of the time.

any ideas? I thought all this ignorance was over and done with but it lives and breathes in my house and on my phone.

Maybe it's the ash from Iceland dumbing their brains?

I have a very strong personality when I'm Ok but I can't fight them. It's also quite scary when the support group you thought you had suddenly goes on strike.

hope you are all feeling not too bad. the weather's lovely in London today - I can see it through my window because I'm only pretending that I'm ill so that I don't have to take my granchilren for a walk in the horrible sunshine!

Thank you in advancexxx
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773755_tn?1328123377
exactly! who would want to stay indoors on lovely day and not hang out with the grand kids? who would do this on purpose??? to the insinuation "you're still sick?", i want to say "well you're still ignorant"! rude, but they just don't understand!
this hell disease is made worse by the pressure and misunderstanding from family and friends. they're sick of it - what about us? i'm sick of being sick, too, but i'm not going to hang sh!t on myself about it, because i need all the support i can get!
sorry, if i had any ideas, i would've tried and tested them and shared them. i can see how friends/ family have felt helpless and felt frustrated for me, and don't know what to do and say, or are sick of talking about how my sick day was today etc.
most are fine, but we have little in common and they're wasting their time waiting for the old times to show up, because, they're not.
here's what i've thought of doing but haven't yet - but i would get a lot more 'allowance' and freedom to be my sick self if i did: get a BANDAID and stick it on your arm. there! that'll get you out of swimming, walking, going out, everything - because you've got an injury! (bit sarcastic but it would work - sure of it.)
when i had my leg in plaster years ago, i could still do just about anything - walk, work, anything - but people would give me lots of space to swing my crutches, and give me a seat on the bus, get well soon cards, and and and. such a scam. i could've gotten disability and sick leave too if i'd applied.
i'll try the bandage, let you know what happens...  :)
take care mate!
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975514_tn?1325001538
It must be frustrating when your family doesn't understand your illness or believe in it. Have you considered printing off some reference material from the internet (perhaps from our site) that explains your condition? I would do that and have a family meeting to talk about it and go over what you need from the family. What you can do and what your limitations are. Make sure everyone understands. I would also bring your doctors name into the conversation to legitimize everything. See if that works. I know it's hard. I have trouble myself. Sometimes it's just impossible with some people. If they can't see it they think it's not there. Good luck to you hun.
-Dusty
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773755_tn?1328123377
exactly! who would want to stay indoors on lovely day and not hang out with the grand kids? who would do this on purpose??? to the insinuation "you're still sick?", i want to say "well you're still ignorant"! rude, but they just don't understand!
this hell disease is made worse by the pressure and misunderstanding from family and friends. they're sick of it - what about us? i'm sick of being sick, too, but i'm not going to hang sh!t on myself about it, because i need all the support i can get!
sorry, if i had any ideas, i would've tried and tested them and shared them. i can see how friends/ family have felt helpless and felt frustrated for me, and don't know what to do and say, or are sick of talking about how my sick day was today etc.
most are fine, but we have little in common and they're wasting their time waiting for the old times to show up, because, they're not.
here's what i've thought of doing but haven't yet - but i would get a lot more 'allowance' and freedom to be my sick self if i did: get a BANDAID and stick it on your arm. there! that'll get you out of swimming, walking, going out, everything - because you've got an injury! (bit sarcastic but it would work - sure of it.)
when i had my leg in plaster years ago, i could still do just about anything - walk, work, anything - but people would give me lots of space to swing my crutches, and give me a seat on the bus, get well soon cards, and and and. such a scam. i could've gotten disability and sick leave too if i'd applied.
i'll try the bandage, let you know what happens...  :)
take care mate!
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Avatar_f_tn
hi dusty

Thanks for your comment. I have tried inviting the whole lot of them to my appointments, given them my specialist's phone number, they don't want to know. Good job they were not around a few hundred years ago otherwise we'd still be being persuaded that the world is flat! It was a very bad week for me as I felt like doo  doo and my husband was working away. No-one actually says anything while he's around. I wish I'd been born a Capricorn instead of a Scorpio. I'm so sensitive I make me sick! Also, I'm very honest and hate the fact that they're being nice but thinking something else. I have tried the family meeting but, because I'm physically weak and take 30 seconds longer than them to assimilate the response, I am over- powered before I've replied. Anyway, it's quiet here at present, sun still shining and good hearted but volatile daughter visiting her father. So, going to have a cup of tea, rest and wait for Mum to tell me it's lovely weather for Christmas and why isn't my sister (48) home from school yet! Bless her.
Thanks again for taking the time. It's so good to know that, even though I wish you were well, some like sufferers are out there and do understand. xxx  
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Avatar_f_tn
Hi, sweetie,
Oh dear! You got nearly as angry as me! Thank you so much for your supportive reply.  It did make smile:
I'm going to put one of your comments on my wall, hope it's ok.

"I'm sick of being sick too, but I'm not going to hang **** on myself  about it, I need all the support I can get!"

I just had a rubbish week and it's always when my husband's away working that they start. I'm really a strong character and don't take rubbish but being physicaly weak and taking 30 seconds longer than them to assimilate an answer gives them an advantage - and I can't even walk out in disgust
iknow what you mean about your leg. I had to into hospital some while back to have some tests re. this condition. I warned everyone that they'd better not send me flowers, get well cards etc. because I'm the same person, with the same problem, just in a different bed. And if any friend or family who I haven't seen suddenly appears they'll be sorry they came. I know it sounds terrible but I know I would have just exploded at them trying to salve their consciences while I am in exactly the same state as I am at home. Anyway it's quiet here at the moment, still so I'm going to have a rest till mum wakes and asks me for the millionth time if my sister (49) is home from school yet. Bless her.
Thanks so much once again for your input and we'll speak soonxxx

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428506_tn?1296560999
My formal diagnosis is Lyme disease and not fibro, but I can relate to this as the medical community is similarly divided on the very existence of chronic Lyme disease, let alone if/how to treat it.

I try very hard to avoid divulging the details about my diagnosis.  There are some conditions to which the public has built up tolerance and sympathy.  Fibro, CFS, Lyme, and many others are sadly NOT in that boat.  

Lack of support from family is even more difficult.  While my immediate family has believed me all along while undiagnosed, and supported my controversial treatment, some close friends are not so close anymore.

For me, I decided not to force it.  At times, support came from places I didn't expect and not from places I thought were safe.  But I was never able to turn around people with preconceived notions, and lost interest in doing so.  Now I just embrace the support I get and try to ignore and forgive those that can't offer anything constructive to my situation.
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