What Do You Do When Even Family Ignore Your Disability

elainebadknee

Hi All

Im writing this post as been struggling like mad with my knee this year cos basically my knee has deteriorated so much I can only do half of the stuff I used to do...I feel how much less active life is, my mum and dad who i live with say they are scared that one day I'll fall when I get out of sofa, etc.....

Now issue I have is with siblings who dont live near us (Scotland) and when one came to visit and mum said "dont you think Elaine's got worse" they commented "I dont see a difference".......Even though I dont go out with them when they visit, can only walk the shortest of distances.......Other members seem of same opinion- I never get asked how my leg is, am I okay, even when Im in thier company and knee collapses they ignore this fact and act like im able bodied and as fit as them......When they hurt something though its a different story, get daily updates, they are allowed to express their discomfort, if i express mine get told I'll be fine!!! Even when had arthroscopy in March this got described as "just a wee op"....But when other member had colonospcopy it was partner all day at hospital, texts in morning, called at night, they had light sedation, I had general and only got text from siblings partner, not them......
How on earth do I carry on as those close to me seem to be sending me signals that Im a fake, it dont matter, its only Elaine......And thats how I feel, im not asking for round the clock sympathy but sibling left today after mum's birthday and I have put in a lot of effort too for this, ordering cake/picking it up, driving to restaurant to save on taxis....Doing all ironing, emptying numerous dihswasher loads and washing loads, plus hoovering and im making tea tonight.....But no they waltzed out of the door with not a good luck word of my app tomorrow.....My dad is going with me but even other sibling had mentioned "its only a consulation you dont need someone with you, do you".......
Im terribly upset by these small contributors and this coupled with job app I sent in not having any response yet (and I know people think Im impatient but I know when things arent going good)...Just makes me feel very upset.......
I put on a brave face for arguments sake but its not nice when those closest to you dismiss your illness too....

Elainex

sharmaine

Hi Elaine

Maybe you're doing too much for your siblings which is why they're not so sympathetic. Having OA in the knees is no joke and for some reason once the deterioration sets in it seems to get worse. You'll know more when you see the specialist. It may be worth getting the Occupational Therapist in to put some aids in the house to help you out. We bought sofa legs online to raise the settee 4 inches and it's made a huge difference to me - it means I can get up without asking for help. Having handrials etc helps too. Sometimes all you want is someone to listen. My OH knows when I'm in pain because I go very quiet and take to my bed.

Regrettably you'll always get some people who will choose to ignore your disability or refuse to give you sympathy because they think it'll shake you out of it. My neighbour has seen me in a wheelchair and on crutches and he had the nerve to tell me what I needed was a good run! It was only after I came out of hospital after my TKR did he even ask how I was doing. Some folks have no empathy for others. They're blind to the discomfort of others.

Why don't you ring to see if they've gone through the applications yet?

I would wait for them to ask before saying anything. Try not to get you down.

I hope it goes ok with your consultation tomorrow.

Regards
Sharmaine

elainebadknee wrote:

Hi All

Im writing this post as been struggling like mad with my knee this year cos basically my knee has deteriorated so much I can only do half of the stuff I used to do...I feel how much less active life is, my mum and dad who i live with say they are scared that one day I'll fall when I get out of sofa, etc.....

Now issue I have is with siblings who dont live near us (Scotland) and when one came to visit and mum said "dont you think Elaine's got worse" they commented "I dont see a difference".......Even though I dont go out with them when they visit, can only walk the shortest of distances.......Other members seem of same opinion- I never get asked how my leg is, am I okay, even when Im in thier company and knee collapses they ignore this fact and act like im able bodied and as fit as them......When they hurt something though its a different story, get daily updates, they are allowed to express their discomfort, if i express mine get told I'll be fine!!! Even when had arthroscopy in March this got described as "just a wee op"....But when other member had colonospcopy it was partner all day at hospital, texts in morning, called at night, they had light sedation, I had general and only got text from siblings partner, not them......
How on earth do I carry on as those close to me seem to be sending me signals that Im a fake, it dont matter, its only Elaine......And thats how I feel, im not asking for round the clock sympathy but sibling left today after mum's birthday and I have put in a lot of effort too for this, ordering cake/picking it up, driving to restaurant to save on taxis....Doing all ironing, emptying numerous dihswasher loads and washing loads, plus hoovering and im making tea tonight.....But no they waltzed out of the door with not a good luck word of my app tomorrow.....My dad is going with me but even other sibling had mentioned "its only a consulation you dont need someone with you, do you".......
Im terribly upset by these small contributors and this coupled with job app I sent in not having any response yet (and I know people think Im impatient but I know when things arent going good)...Just makes me feel very upset.......
I put on a brave face for arguments sake but its not nice when those closest to you dismiss your illness too....

Elainex

speedalong

Hi Elaine,

I'm sorry you are unsupported by your siblings, sounds like your parents are on your side though. People who are generally healthy and then have something wrong with them are so unused to having something wrong they tend to make a big fuss over it. People like us with longer term chronic conditions, folks seem to run out of sympathy. It doesn't help that pain isn't visible. My deputy at school remarked one day (I was having a really painful one and could barely walk, let alone jump up and down off my chair, pick things up off the floor and generally hare around) "ooohhh," she giggled, (stupid c*w!) "you're a bit wibbly wobbly today aren't you!" I wanted to crown her. There I was struggling and in agony ... Unless you have lived with chronic pain though, how can you understand it?

Good luck with your appointment, are you all prepared?

Why don't you ring up and enquire about interviews this week as well.

Speedy

dorcas

Hi Elaine,

I agree with a lot of what Speedy & Sharmaine have said....
there are some people who will never understand... or who do not want to understand what living with this debilitating condition is like. It's all the harder though when it's members of your own family. :roll:

Your siblings do 'know' at some level what you are going through but for some unknown reason fail to acknowledge it.
I personally wouldn't expend any thought or energy into trying to make them understand or empathise....it just may never happen and you will feel more frustrated and rejected by constantly trying..

You have nothing to prove to them Elaine and need to concentrate on yourself and what is going to help you.
You do have the support of your parents and you dohave the support of your friends on the forum. and we will continue to be here for you.

I hope your appointment tomorrow is positive for you.... what time is your appointment so we can be with you in your pockets?

Chin up EBK... we are all thinking about you and wishing you well.

Iris xxxx

barbara12

Hi Elaine
That is why this forum is priceless, you can talk to people who know some of what you are going through.
Like speedy say you cant see pain, I dont like to talk about my pain to people, its just the way I am, I just go quiet, the trouble is if you are not a moaner they think you are fine.
My cousin is the best at moaning and I always sympathise, because someones pain is unique to them, but yesterday she called round, and had a migraine, now i know these are painful, but she said to me you dont know what pain is till you get a migraine, now what do I say to that.
Families :roll:
Good Luck for Tomorrow
Love
Barbara xx

elainebadknee

\hi Sharmaine

Well i do try my best not to be idle and do my share but im just a bit fed up of getting no credit for anything...It was same when my dad had TKR cos i lived with him and everyone else got special leave off work to come and assist him...Afterwards it was commented on that (shall use made up names) Jack, John, Jill was brilliant, but no mention of me and i dont know its like cos it wasnt mentioned nobody had acknowledged what id done.....
Its not my home either so i cant really ask for aids...I know my parents are getting older and im seem as a burden now cos im still at home and an annoyance....

I think its more hurtful when them close to you dont even recognise your struggling, can cope with strangers but when family dont see it thats quite hurtful.....

Thanks

Elainex

I hope it goes ok with your consultation tomorrow.

Regards
Sharmaine

elainebadknee wrote:

Hi All

Im writing this post as been struggling like mad with my knee this year cos basically my knee has deteriorated so much I can only do half of the stuff I used to do...I feel how much less active life is, my mum and dad who i live with say they are scared that one day I'll fall when I get out of sofa, etc.....

Now issue I have is with siblings who dont live near us (Scotland) and when one came to visit and mum said "dont you think Elaine's got worse" they commented "I dont see a difference".......Even though I dont go out with them when they visit, can only walk the shortest of distances.......Other members seem of same opinion- I never get asked how my leg is, am I okay, even when Im in thier company and knee collapses they ignore this fact and act like im able bodied and as fit as them......When they hurt something though its a different story, get daily updates, they are allowed to express their discomfort, if i express mine get told I'll be fine!!! Even when had arthroscopy in March this got described as "just a wee op"....But when other member had colonospcopy it was partner all day at hospital, texts in morning, called at night, they had light sedation, I had general and only got text from siblings partner, not them......
How on earth do I carry on as those close to me seem to be sending me signals that Im a fake, it dont matter, its only Elaine......And thats how I feel, im not asking for round the clock sympathy but sibling left today after mum's birthday and I have put in a lot of effort too for this, ordering cake/picking it up, driving to restaurant to save on taxis....Doing all ironing, emptying numerous dihswasher loads and washing loads, plus hoovering and im making tea tonight.....But no they waltzed out of the door with not a good luck word of my app tomorrow.....My dad is going with me but even other sibling had mentioned "its only a consulation you dont need someone with you, do you".......
Im terribly upset by these small contributors and this coupled with job app I sent in not having any response yet (and I know people think Im impatient but I know when things arent going good)...Just makes me feel very upset.......
I put on a brave face for arguments sake but its not nice when those closest to you dismiss your illness too....

Elainex

[/quote]

elainebadknee

Hi Speedy

I dont know is it cos they dont understand, but they did with my dad? Do they feel that cos im younger that i should be able to cope better?
I mean as im typing just now there is a lot of fuss being made about bloody athlete's foot!!!!
Im prepared in a way but sometimes you can be prepared and all coiled ready for action and then the consultant walks in and is off with you and puts you off kilter...
The job thing im e-mailing disability coach from DWP about that but i feel im getting knocked back despite being told they would welcome an applciation......
I feel a bit bitter and let down......

Elainex

elainebadknee

Hi Iris

It is harder you know and maybe when i do fall over and hurt myself they might be a bit more thoughtful but it makes me not want to help them and thats family im talking about and it aint supposed to be that way....Im sort of past the point of mentioning when im in chronic pain as i think whats the

I know that mum n dad are supportive but im still seen as a hinderance and i get told al time that i was reason that they never moved years ago as dad (yes only him) didnt want to leave me....

I am thankful for all you great peeps, it is an outlet to an extent and i probably go into full victor mode......

Its not been an easy year and i wish it were over, but whats round the corner.....

My apps 11.30am at Wigan....Will get kangaroo type pouch for you all...

Elainex

I hope your appointment tomorrow is positive for you.... what time is your appointment so we can be with you in your pockets?

Chin up EBK... we are all thinking about you and wishing you well.

Iris xxxx[/quote]

elainebadknee

Hi Barbara

This forum is good, i mean its the only site i use on a daily basis....Thank goodness for it eh?

I know people cant see pain and i dont blab about it when i go swimming etc...But even with family now when they ask how my knee is i just say brief answers like its fine, or just the same.......I know everyone has their gripes, i cant imagine what childbirth is like, or migraines so i apprecaite that....

I hope tomorrow i turn a corner, really do but im awful upset...Feelling ignored, invisible.

Elainex

barbara12

Awww Elaine
Wish I could come to the hospital tomorrow and give you a real hug...has you know I dont live far away from Wrightington...but tomorrow is bloods day, to see if I can go back on anti inflammatories :roll: anyways here are loads of cyber hugs ...next best thing (((((((((())))))))
Will be thinking about you.
Love
Barbara xx

dorcas

sometimes Elaine, the people that see you most... notice least :roll: there's no explaining it.
I'm just so sorry that your family are so inconsiderate. perhaps they are just so wrapped up in their own concerns they have no room for anyone else.... or they feel guilty ..or jealous..that they haven't been around for you and your parents as much as they should.

remember you are the one who's been organising and preparing for your mum's birthday... and it's down to you that it was such a success.
whatever the reason we can only guess at. You can only hope that they will realise one day the hurt they have caused you and be more supportive.

Elaine... I'm glad you found the forum where peeps genuinely care about you and are interested in how you are.

I know you are hurting with all of this flower but try if you can to put it behind you long enough to concentrate on tomorrow's appointment......
write down all the points and questions you have.... don't leave it to 'chance' when you've been under such stress. if necessary hand the consultant the list you've prepared. he cannot ignore it and you will not leave feeling that you haven't been heard.

love and strengthening (((hugs)))

Iris xx

elainebadknee

HI Barbara

Well you know just that you wrote that down is a lovely enough thought....I hope you get on okay at your bloods (just happy I dont have to endure that as Im needle phobic)........

Thanks for hugs and thoughts...

Elainex

elainebadknee

Hi Iris

I dont know, i try to sympathise with people but on the other hand i dont suffer fools gladly, if someone is milking the hand of kindness they are being given i dislike that, family or not.....
I mean it was mums birthday, she made tea on friday, has been washing like mad, making full english breakfasts and the like......So who needs the attention more???Crazy....

My family think I have held my parents back down here and that i havent got a stable job or place of my own that im a hinderance and thats how it is........I dont get the right of most opinions to do with how we live and where/who comes, etc.......They blame me but they dont come as often as they used to........

Im not saying i was only one organising birthday but ive done my bit, but it wont be remembered what ive done, itlll be remembered that i didnt do something or I need dad with me tomorrow....

I am disappointed re Lakeland, i got the impression they would welcome my application but it seems everything is not as it seems...I saw the uniform lady about 2 weeks ago and commented on here that she did not want to say hi, it just makes me think now they have said Ive applied, asked round and someone, somewhere has said "we dont want her back"....Even though i never had a cross word with anyone there....I want answers to that but all in good time...

I will have to try and put down a list.......Havent got a clue where to start......

Thanks for suportive hugs...

Elainex

skezier

Hi Elaine,

I had the same with my siblings bar one and well now I have no expectations so am not disappointed. Saying that I learned the hard way a long time ago.

I kinda wonder if its cus your back with your parents? It does seem to be the case that if your 'at home' you are sort of taken for granted..... I don't know why but I do know a few people who are back with their parents and have the same problem over never being thanked or acknowledgment of what they have done.

I have no idea how you can change it I am afraid see I just walked away and have very little to do with them.... I am sure there is a better way from that though. A ((( ))) and a hope you get a decent night in a bed and sleep well tonight. Cris x

sunnyhours

Hi Elaine,
I know how you feel, I'm only 21 and I live with 3 of my "best" friends and they still tell me what a "druggie" I am, taking all the pills I can get my hands on for the pain as it's getting unbearable...even more so when they don't seem to understand and they tell me I'm making it up or that "It's all in my head"...
I'm really sorry you have to go through this as it makes things worse and it's kind of a mental torture as well which we all know doesn't help with the physical torture we go through everyday...
Wish you the best of luck for your appointment,
Fred.

valval

hi they sound selfish they know you have arthritus but do not know what that entails you have to have it to understand what it is to live with. my advice to you is live and let live do not ask after them till they show more interest in you.
life with arther takes some getting used to and a lot to get your head around as for job hunting at same time that a lot to take on you have us we understand and you parents sound great so take step back and focus on you, those who do not wish to make an effort to understand well that there loss not yours you will be there when they decide to listen till then think about yourself good luck at hospital here if you need us val

hileena111

Oh Elaine pet I'm so sorry....sending you loads of hugs ((()))))) dont forget those kangaroo pockets tomorrow.
When I was reading your original post i was wondering if you were doing too much and people not realising how much pain you were in. If people ask how you are tell them.....not in great gorey detail but tell them about your pain...not just fine..

I'm sorry pet i dont know what to say. (((()))))
Hope to see you on here tomorrow afternoon

Love
Hileena

dippydoodah

hi elaine, sorry ive not replied sooner.

just a quick note to offer my best wishes for your appointment. im sorry to hear your having such a struggle with your family. i used to get the 'maybe you should just exercise more' from my dad...

i live in wigan so i shall send gentle hugs your way and hope they get to you ok xxx

nanasue

Hi Elaine,
Sorry to hear you're having such a bad time. I don't know what it is about family why they don't behave as we would like them to. My husband has ankylosing spondylitis in his back and OA in his right knee, but of course his pain is always worse than mine and he makes a big fuss about it, if I say I'm having a bad day or struggling he just tells me to get on with it, so how hypocritical is that !!!!!!! I have RA by the way. My 2 grown up daughters and son don't even ackknowledge it, when I'm not good they say "what's up Mum" and I used to get upset by it but now I usually just tell them I'm tired, it's not worth the aggravation of having to explain, they should know after 5 years, especially as I explained it all to them when I was diagnosed.I got more sympathy when I was menopausal!!!! I know it's really hard but I think you just have to develop a thick skin to it and come on the forum and get it all off you chest with a good moan, because we understand we'll always be here to support you and maybe come up with ideas to help. Hope this helps a bit and you have a better day tomorrow.


Love Sue
xxx

salamander

hi Elaine, It can be hard to get through to people how you are feeling. I know some of my friends and family don't get it but some do and am grateful for that. I know I carry on doing stuff far longer than I can really manage and suffer for it. Are you doing the same thing? I am trying to learn to be much clearer at the beginning so as not to get resentful and angry. Not easy if you are the one who thinks of others, you wonder why they don't think of you!

Wonkylegs

HI Elaine

just sending you some special hugs (((((()))))) and to let you knwo that I'll be in your pocket in the morning, and I already have quite a few lodgers in my pockets for the afternoon, so you'll need a big pouch to fit us all in

good luck and as for family .... I'm afraid sometimes you just have to ignore them and get on with what helps & is right for you and let them get on with their own lives in the way they want to. It isn't fair, but then in my experience the last place I've ever found 'fair' has been within our family :roll:

good luck & I hope that you get some answers at the appointment.

hugs
WOnky

julie47

Hi elaine good luck with your appointment'
I ill be in your pocket too,

Sorry that your family don't understand your pain or choose to ignore it.
Until you experience pain such as arthur (I have RA) I do think it is hard to understand. Espeecially as you don't see them very often.

I understand you so I am sending you hugs((((((((())))))))) and I hope you hear about the job soon.

juliepf x

ps Wonky I am already in yr pocket for today had it written down

sharmaine

Hi Elaine

It's nice that you help around the house, Your dad must understand what it's like to have problems with the knees having had a TKR. Even though it's their house I'm sure they would be accommodating with regards to a few aids around the house. Why not have a word with them?

I don't think I can add anymore to the good advice you've received from others on the site. When you have a chronic condition such as arthritis it's hard and it doesn't help when those close to you are not sympathetic. All I can say is that in time you'll find inner strength to deal with it all.

Good luck today with your appointment.

Regards
Sharmaine

angie1973

Hi Elaine,

It's so hard isn't it when you have something 24/7 for someone else to understand and contemplate just what that means. Most people are very lucky and are well. They don't suffer constant pain, therefore when they do have an accident or operation etc, it's like a big deal to them, completely out of their normal routine etc. Others tend to then fuss around them and want to care for them, which is good, and of course we would all be the same.

But when you are in pain or having issues 24/7 people stop noticing and forget. It's like colouring your hair bright yellow. It will be a shock to everyone at first then after a while it will just be that hair colour, becomes normal. I've found that most people 'forget' in a way that I am ill because it's so normal they forget actually there are good days, bad days and down right horrible days and if you have one of those they seem shocked there is something wrong.

Strange, but true.

Hopefully you have enough support around you though to make up for the few that are not supportive or as understanding. I'm glad I do, enough for me to know someone cares, which is all any of us really want isn't it?

Have a gentle hug from me.
Ange..xx

tkachev

Hi Elaine,
I am sorry for you and I have similar issues with OH family. It is so dis heartening and I often feel abandoned to just get on with everything. Despite struggling with pain I never get any thanks or praise-only from people on this forum.
My family are kind and caring and couldnt do enough for me when visting. They were always anticipating my difficulties. Sadly they live away and I dont see them often.

My 2 older daughters can be a bit thoughtless when they visit and I find myself getting edgy and finally making comments. They leave cups and food all over the bedroom and it is an effort to try to avoid the crockery and glass or pick them up off the floor( cant bend and risk dropping remains everywhere).Eventually the comments will sink in but id much rather get help without all the asking!

Elizabeth

freeview

Oh am sorry to hear your family are like that Elaine, I only have friends who say the same thing...like why dont you go to the gym ? its helped my knees no end , or once when a friends lift was broken and she lives on the 2nd floor she said "the exercise will be good for you " :x You just want to give them a slap and say I wish you could have this pain/discomfort for a few days then come back and say those things !
Lou xx