people don't care???

lulubell69

hi folks
This is not a sympathy trip, just an observation.
Going through a very rough time with RA, so doing alot of lying / sitting down, not being able to do much. I have begun thinking about how my family (ha) and friends (what friends) have supported me during the last nine years. My poor hubby has been an angel and my three teenagers have learned to fend for themselves, even my disabled son (Downs Syndrome).
My mother has never showed any interest and never offered to help out with the children when they were younger. If I mentioned my RA her reaction was as though I was telling her I had a snotty nose and she would change the subject. My sisters have only ever put on me, again, not remotely interested, which cuts me up, if they needed help I was always there doing for them. Don't bother with them now.
My friends, they disappeared soon after I was diagnosed and was very poorly for a very long time. Even now, people have no idea how RA affects your life and can completely consume you at times. They think it's just a bit of pain, get over it! I wish....
Does anyone else feel as though family and friends don't understand or probably worse, are not interested and feel deserted in times of need.
I would just like them to show they care.
Thanks for listening
Les

dreamdaisy

This is a common plaint on here, lulubelle, and it's understandable. I think it's difficult for those who don't have any form of arthritis to grasp what it involves. It's an odd concept that we go to the doctors, take meds and don't get better. It's difficult to grasp that although we look alright we need to rest. Do my / our friends understand? No, not really, but one pair make a real effort and that is appreciated. My mum? Well, she feels very guilty about it all and tried to be supportive but she has her own worries and concerns now.

We expect people to treat us as we treat them and sometimes that doesn't come to pass. You have the support of your husband and children and they are the ones that matter. And don't forget us - we know what it's like. DD

frogmella

Hi,

It is true that "normals" don't get it. I suppose, how would they? On my more forgiving days I understand how they don't understand. On my bad days, which it sounds like you are having now, I really don't see why it is so hard to understand!

I have spinal arthritis after having a prolapsed then fused disc three years ago. I get a lot of "helpful" comments about how so-and-so/me had/have a "bad back" and xxx helped. I do wonder what these people think. Do they think I haven't tried physio, drugs, rest, stretches, exercise, surgery etc etc?! I cannot understand why they can't see how these statements bother me. Can they not see that on my bad days, when I can't even stand for long enough to make a sandwich, I hate the people who are cured by xxx? I am so jealous of the people who can get fixed like that! Sorry, that was a bit of a rant :oops:

My husband is fairly understanding but if he is having a bad day too (looking for work, aaargh!) then he is less understanding. I have one friend who understands sometimes but, to be honest, I have stopped telling her how I really feel because she tends to turn it on her somehow. But I do have one friend who really gets it. She has seen me through the last awful year and has supported me wholeheartedly. I think the reason she gets it so well is that she has an invisible illness too in the form of anxiety. We have had a lot of conversations around how other people can't get it and they are so similar! I also have a lot of friends at swimming who get it. I think because a lot of them have also suffered with similar things. I get a lot of support there. I hate it when I can't go swimming, I miss my pals!


As DD says, we get it, on here. I hope your bad time passes soon. Gentle hugs. Froggy

LignumVitae

Hi Lulubell

I recently binned off friends who weren't understanding - they'd known the sporty me at school but despite being able to see the change, they had less than a supportive attitude - I decided that I didn't need that. I increasingly see that social battle as just another aspect of arthritis that we have to cope with. These people reap what they sow.
Don't let it get you down (easier said than done I know) but I love the line in 'there is a gorilla in my house' that describes how the non sympathetic people will one day end up with their own gorilla...when they do, you can smile and nod at their complaints.
As for your Mum, I do wonder whether it is a guilt thing, I know my Mum struggled to cope with my problems because of a sense of guilt. She spent years telling me I didn't need methotrexate until my body illustrated to her why it did. I think it was more head in the sand than lack of sympathy. As it is, be pleased that you have raised three children who will never discriminate in that way and will have understanding and love to people - quite an achievement given the number of people who don't understand!
You got love and support from me! Love LV xx

barbara12

Hi
Like DD says this is very common on here, I do think that with your friends sometimes it a case of how to handle it....I have lost touch with a couple of friends...but also made some new ones on here...like you my hubby is brilliant...and does understand some of the pain...but nobody can feels your pain like you do....
Its so sad that your mum is like she is, but I wouldn't wast any energy worrying or wondering why she doesn't help out.
I do hope that talking about it on here will help you .
you take care x

valval

there are different types of people in this world those who take and those who give at times like this you tend to notice which are which.
bet your sisters take after your mum, but it hard for a mum to think they have given this to there child it easyer to pretend it does not exist or is not as bad as it is. forgive your mum and do not waste energy on those who make no effort to get it.
you have a loving family so be happy that they are not selfish people you have made good job of bringing them up and it good for teenagers to be able to look after them selves.
do you let others see how bad it is i know i always make more effort to walk tall (lol) when others about i am quite a private person and do not let others see pain easy so how can they see how much is there unless we show it val

knuckleduster

So true, people who do not suffer from arthritis really do not know what the pain can be like. We may look alright on the outside, but inside is a different matter. Have you got a local Arthritis Care support group nearby? My arthritis came out of the blue, neither of my parents suffered from it, nor do my brother and sister. Husbands can be very supportive, I don't know what I would do without mine. Have you got any of the AC booklets you could show to your mum and friends as these could help them to understand what you are going through?

Keep in touch with the forum - as we understand how you are feeling.

Janet x

mouseymousey

I think they do , but - I've found everyone has their own personal hell.
Everyone has something in their life which is truly awful which they have been through or are going through.
Maybe it would help if you could go to a Pain Management Clinic? They don't cure you, as you know nothing can; but they do teach you how to manage it (what can I say it worked for me).
Of course another great option is ARC through the boards and the phones. It helps (me) to say things here I never could to the nearest and dearest. The comfort of strangers.
Hope today is a better day.
M xx

deedeeitsme

I don't think it's that they don't care they just don't understand. We even say ourselves that they don't know what it's like unless they've got it. My oh is a star and I don't know what I'd do without him. My friends, the ones that really matter have always been there for me, my oh works weekends and my friends always visit, ring before they come to see if I need anything, take me out for lunch (I can't remember the last time I had sunday lunch at home) and generally keep me sane. My family are very supportive too but don't pretend to understand what I am going through but they do say that they know when I'm in pain because it shows in my face.

x Dee x

earthspirit

i think that what you have to do is educate educate educate and actually dont just shut up and stop whinging, make them actually listen. RA is a very serious condition and if it was their heart or liver or cancer of whatever you would be expected to listen to them.

RA is like a joke disease to some people - dont let it be!

sometimes tho, you actually need to say to people or should have said to people when kids were little that you did actually need help. if you carry on acting like you can do stuff then that is how you will be treated.

this disease doesnt get to your head. a disability does not make you stupid.

the people dont care a lot of the time....they are too wrapped up in their own selfish little lives and their next holiday or the fact they are skint or life aint dancing to their tune.

humans it seems by nature, are incredibly selfish people. we learn the art of being kind and good and compassionate.

you are not alone with your thinking

Mat48

I read this thread with interest and sympathy. However Earth Spirit's point that people can't know unless it's spelled out to them is in keeping with my thinking too. I'm actually a bit sick of people telling me how brave and stoical they are being by carrying on in silence and saying "I'm fine" to friends, family and doctors when they are not. To me courage is standing up and saying "I have RA and this is what it involves for me so far - and what it might involve in years to come". If you say it clearly to everyone you know once then if they don't get it and are not flesh and blood cull them from your list of friends and if they are related then try again.

No one will ever understand arthritis better if it's constantly played down. A diagnosis of a disease such as RA or PsA or Lupus should be seen by others as just as traumatic as learning you have cancer. At least with many cancers they are curable - arthritis is not. We often have to take cancer and malaria drugs for many years/ a lifetime, battling with the side effects as much as the disease sometimes. Don't try and be noble - it is actually self-defeating - especially with the medical profession.

As others here have said you have your immediate family on side and well brought up and unselfish so treat all others who don't support or help you with boxing gloves or else just avoid them. Your mother sounds as if she is suffering from extreme guilt to me. Mat x

stickywicket

I have to take issue with you there, Mat. A diagnosis of RA, or other forms of arthritis, is nowhere near a diagnosis of cancer. As soon as I was diagnosed with cancer I knew my life was on the line. Yes, it was only breast cancer ie one with a good success rate but I never felt it was about major changes (as arthritis can be) it was about possibly saying a final goodbye to my teenage sons and all whom I loved.

People deal with chronic disease individually. Some will play it down: others will go for the sympathy vote. I think it’s tough enough dealing with it all without feeling one must spread the gospel message of RA at the same time. Most people are not interested and that’s their right. If people are interested I tell them as much as I think they want to know in a way that makes it clear they can ask more if they want to know more. I see no point in giving anyone a blow by blow account of my day and/or life.

I don’t think it’s about being ‘noble’ so much as ‘normal’. I’m a normal person with arthritis not a boring arthritic who should never be asked ‘How are you?’ in case she tells you at enormous length. My friends and family are very comfortable with how I am. They know I will say if I need help and they know if I say I can’t do something then I mean it. We very rarely talk about arthritis just as we very rarely talk about C’s thyroid and gall bladder problems, A’s IBS, D’s hernia, T’s rectal cancer or J’s MS.

We all need our nearest and dearest to be ‘on board’. This means being honest with them. (“Would you hang the washing out please? My arms are rubbish today") without being self-pitiful. People who don’t want to know will never want to know. So-called friends can be dropped. Immediate family need facts. The rest is up to them.

dreamdaisy

Arthritis is not that interesting a topic, either to us that have it or to those that don't. I understand about arthritis because I have it, but I don't have a clue about living with Parkinson's, diabetes, MS, cystic fibrosis, muscular dystrophy etc etc etc. Neither do I feel the need to bang the arthritis drum (mostly because it hurts my hands). It is what it is, it will do what it will do and I don't care if people understand it or not. I admit I give a wry smile every now and again as friends moan about the aches and pains of naturally ageing but of course they are going to complain. Their bodies are 'failing' them as a matter of course and it must be tough to accept that you need to rest a little more after a ten mile walk than you used. Poor lambs. I find the idea of 'binning' friends because they don't seem to understand distasteful. Friendship is worth more than that and about more than that. DD

Mat48

I'm not really talking about binning friends of course if they are friends - but getting shot of those who make unreasonable demands of people with arthritis and who compete with slight ailments etc because they want all the attention and can't share life's ups and downs equally. And I don't mean bore people with ones arthritis either. I simply mean that one shouldn't feel obliged to hide pain or pretend all is hunky dory when it's patently not.

On a good day (most days presently for me) I wouldn't dream of speaking of my RA but if I'm walking with a stick or splints in occasion I want to be able to say why if asked without fear of being met by ignorance, indifference or made to feel like a drama queen. I do make the effort to support my friends and acquaintances if they have cancer or depression or MS or are bereaved
so it is only fair to expect the same back and that shouldn't involve burdening or dumping - but educating where necessary just as I've been educated by them about how it feels to have breast cancer or lose a child. If everyone just gives wry smiles and keeps the damage arthritis can do under wraps then how on earth can it ever get the funding, research and classroom
and alarm that sufferers deserve? Mat

Mat48

Oops sorry I'm in transit - that should read compassion not classroom!

dreamdaisy

Classroom was mystifying as is the alarm. Should that have been summat else too?

Mr DD has been struggling this week with a bout of gout in his right ankle (it used to affect his big toes, now it seems to be on the move). He felt he couldn't say anything because 'It's trivial, it's not a patch on what you deal with.' I robustly told him that thas was utter borrox. Whatever ails our friends or family is NOT trivial. If it causes discomfort or distress, be it a cold, a sore throat, a bug or whatever, it is causing them discomfort and distress and they need to be shown concern and compassion even if we think it's just a tiny blip on the radar of life. So what if that concern isn't returned as we feel it should be? You see it on here too - there are some who only post about themselves and don't show an ounce of interest in anyone else's trials and tribulations. DD

frogmella

I think that is a good point. My OH always says he feels guilty if he moans about his back or whatever, but I always say that of course he should say if he is in pain. I do, though, always suggest taking some para or ibuprofen too. Seems he doesn't think to do that by himself!!

On refelection I think that a lot of people do care, it's just that they don't understand.

Mat48

Well given that this thread started about lack of compassion from wider family and friends etc I was focussing on these groups. I have a friend who has suffered from both breast cancer and RA and she told me she had explained to her GP that for her RA was much more scary because it represented a lifetime of drugs and pain and also would not exact people's compassion in the same way as the word cancer. I suppose I knew that RA could even be life threatening because an old neighbour of ours died when it got to her heart and lungs - but it was the prospect of a lifetime ahead of chronic pain that so scared me to begin with.

Now I'm incredibly lucky and presently need tell no one about my RA and that is great. But for others who have felt very isolated and unsupported despite being in much pain and needing and not getting help - I think the starting point has to be about educating those we may need support from. If they don't know what arthritis means and we don't explain clearly how it affects us then really it's no wonder they don't rally round or make assumptions about us coping. If we say "cancer" we get a response because of the huge fear/ mortality component but if someone had told me what having arthritis meant to them prior to having it myself I would undoubtedly have been a better friend than I was (although I'm told now that I wasn't bad!)

My dad had terrible gout when I was young - his feet would sometimes even split open with it poor man. Pain is pain and should exact sympathy from us because we know this! Mat x

kittendriving

I find the best thing for my mental health which has worked 98% of the time is "I don't need you".

My dad loves me, I know he does, but everyone else has always mattered more than me (my mum died years ago). This is because he just can't take the thought of those close to him being in pain / upset etc. It's a selfish view but that's the way he is and it's taught me to just keep going and only rely on yourself in the long run - your worth it, as the annoying advert goes Stay focussed on your good points and accept who they are or get rid out of your life.

Perhaps your mum and sisters are the same. Perhaps the thought of you being ill and in pain upsets them, they just can't tell you. When my sister was very ill I shut off from her so it must be hereditary! Hope I don't sound cold and bitter coz I'm not, it's just a fact of life.

Hope you stay, metophorically (spelling?) on top of them mentally and don't let it drag you down.

Rewter

OP - I really feel for you on this one. Your familly should be the ones wanting to help you more so than anyone else in this world!!!

I think its due to Athritis being a bit of an unknown to people. Certain things, such as the Big C mentioned in this thread or things like heart disease, people can relate to or know the severity of it and its risk to life.

A lot of people I know have heard of Arthritis but don't really know what it is. A fair few people I speak to THINK they have it in their hands just because they get a twinge so must be Arthritis. :?

My parents fully understand and are very suppotive though they do feel guilty for some reason. My Mrs tries to understand though I know at times it gets her down when we can't do things. Unfortunatly she has been diagnosed with wear and tear in her hip so no doubt over time, she will learn to understand the hard way

My sister. Well, she is always the most poorly person in the world, a major drama queen who really knows how to play the game. She needs her BB as she can't even walk into a shop as she has no energy though she has so many good days its untrue and can often be seen 'jumping' up and down as she gets out of her disabled bay parked flashy sports car and 'runs' over to meet mum and dad at the supermarket... I kid you not. I have challenged her on this but its all about how she feels on her worse day. Now, I fully understand this like most people on this forum would but not once in my 36 years have I ever seen her struggle in the slightest, neither has my Mrs or my parents. Apparently the BB is good for her when she goes to London on her weekend breaks ( every weekend ) and she can go inner city without charge and park pretty much where she wants. My dad has a BB due to his heart disease and arthritis of his hips and my mum has nunmerous back problems and arthritis in the hips as well...... this smacks us in the face a bit when its pretty clear what is going on. She does not seem to be bothered about my issues and never asks how I am, even when she is told how bad I have been recently, Its all about her . Thats just the way some people are.

My friends and good work friends don't always understand though they do try and help me by fetching me drinks or carrying my work bag to the car.

Unless someone suffers from Arthritis, I don't think they will truely 'get it' unless they are very understanding and open minded.

Mat48

Well I think I'm right in saying that yesterday was national arthritis day but didn't see it featured anywhere so am wondering if I imagined it? I don't agree with those here who say that there's no point in trying to explain it to people. From my experience those I take trouble to explain it to are interested to a degree - as I would have been before I got it myself.

I don't even tell people in the context of my own RA always - but for many who get it it is life changing and I think that it's important, especially for younger sufferers, that the image of arthritis becomes more realistic and less tied up in only affecting the elderly. Even just from the point of view of people with kids with conditions such as chicken pox and nasty viral infections - if people know you are on an immunosuppressant drug they are more thoughtful about contact in my experience. It's not about pitting it against other diseases such as cancer - although more funding for research is always an important consideration too - but just so it is on a level playing field. Selfishness is always going to be a problem with all health issues and there will always be health bores in the world too.

As for families - both my parents died suddenly before I developed RA so I'll never know how they would have reacted. But basically I think a large degree of independence of spirit is always helpful in life. Mat

stickywicket

I don't know if there is a National Arthritis Day, Mat: World Arthritis Day is October 12th.

I no longer get the 'You're too young to have arthritis' thing that I did in my youth :roll: but I do like to emphasise to people that small children get it.

I very much agree with your last sentence.

Mat48

Oh yes sorry I getting was confused by something I read I think - or dreamed perhaps re World Arthritis day. It's that sleepy time in the afternoon Stickywicket and having done too much housework - or maybe i was thinking of the end of the Olympics and all those athletic types - not sure where I got that notion from actually?!

I'm very relieved that I have only developed this RA in my late forties and am always humbled whenever anyone properly young comes in with any form of arthritis. I imagine it's additionally hard having a disease everyone associates with the elderly - especially because it's invisible so the whole BB matter and needing to sit down on public transport must be very difficult. And I have the bonus of doctors telling me that I'm young in the context of my RA and treatment now which is always rather gratifying! Mat x