Ignorance and loneliness

[bruce18]

I have been reading other questions and thought this problem needs tackling more indepth.

I look ok on the outside from a distance and even on a good day my walking ain't half bad but even when it isn't good I put a front on. I have to say I am disgusted by peoples attitude to those people who are ill - its almost like they do not want to catch it themselves - ignorant.

On the school run I got talking to a very chatty mum and she actually noticed that my walking can be stiff at times and so I told her i had ra - for her then to tell me about her bad knees - argghhhhhh - why did I bother.

People such as my mum and dad and sister, where all over me when I was first diagnosed and very supportive but 2 years on I hardly see them - I feel like telling them that I still have ra and still need the support. I do not hear from my sister and I keep trying to ring her and get no answer but she doesn't get back to me? The stress of this is very upsetting and she obviously doesn't realise that the stress isn't good for the ra Could cry now...

I basically feel that as a species - human - we are uncaring in the face of the unknown. Where has our empathy gone? I am a sensitive individual and wish to be treated like how I treat others ...but we speak without consequence and to hell with who we upset.

My grandma is 89 years old. She is like my 2nd mum and I used to help her out so much in the garden but of course now I can't. She doesn't get why I have now put on weight and don't go round so much. I feel like a fraud when I see her which is stupid because I have ra. RA is a silent and lonely disorder and like somebody - jeanabelle - said it should just be called Rheumatoid disease/disorder. Arthritis needs to be taken out of the equation...

We don't get the respect and I only have my understanding husband - but not my family or the general public. Everyday life is lonely with ra with or without this site...

Claire

[Hidden]

people are so ignorant and uncaring arent they!

[Tricia-P]

Dear Claire

I agree , I also have similar situations to yourself, with my sisters who have osteo and also what were so called friends that i used to go out with, but now that going out is more difficult I don't see them. Ex work collegues never show. The only true people you will come across are on here the same boys and girls have been on this site for as long as it's been going and they remain there to give you a hug or a bit of support. You sound like youv'e had enough can you get out at all maybe see if you can find a meeting or something similar. I started to make cards and i go to the craft mornings on a Friday I've met new people who don't seem to judge. Thats what we need. Give NRAS a call they maybe able to help in someway it's always worth trying. Gentle hugs Tricia P

[bruce18 in reply to Tricia-P]

Thank you - that is a real good idea. I do like making things - sewing especially. Think I may get my machine out and make a top for a nice day out. I do feel like i need to get out into the real world. Thank you again Tricia P - Claire x

[Ozzy]

Don't you find that if you mention you have RA then every body you speak to have a little arthritis in their little finger etc. I try not to tell people, if somebody notices my wrist is strapped etc I just say I hurt it or not feeling to good maybe coming down with something. Also my husband doesn't understand at all he is one of the stiff upper lip brigade so with out this site and NRAS I don't know what I would do. Thanks everybody

[bruce18 in reply to Ozzy]

Hi, Ozzy - yes I completely agree. I had started not to tell and now I have spoke about this on here and the more I think about it; it is best if possible not to tell- so much easier/hassle free and I completely get what you mean Ozzy. I feel very lucky to have my husbands support - it must be quite lonely at times for you but like you say this site offers what is lacking in our life of ra - thank you Ozzy - Claire x

[nellysgran]

Hi Claire, i completely understand your blog and i agree with everything you have said there are an awful lot of people who just dont want to understand and think that RA will pass!!, ( I wish !! ) as you say if you mention the arthritis bit then they have that as well !! I think the only people who understand are the lovely people on this site.

Gentle hugs Wendy x

[bruce18 in reply to nellysgran]

Hi Wendy - Thank you. You've hit the nail on the head - "the only people who understand are the lovely people on this site." - this is very true... thank you again - Claire x

[sylvi]

Claire, i understand completely what your talking about. I got made redundant 3 1/2 yrs ago and i don't see any of my work colleaques at all now,there is one who messages me,but that is all (thats only because she copd and understands) I am lucky in the fact that i have a loving and supportive hubby and children who without them i wouldn't be able to manage.

I should have gone to a weddding on saturdaybut i couldn't make the journey up there let alone the evening do. My cousin understands because she has worked with the disabled and she knows what i am talking about.

|Do you find that when people ask about you they say they really should make an effort to call round, but never do. It is so comical when they ask my daughter how i am,in the next breadth i say "did they say they would call" and then we laugh as we know they never will. I have met some lovely people on here who i have never met who have become lifelong friends and will always be there for me and i am sure you find the same thing. I also belng to a couple of groups on f/book so you might want to have a look. Feel free to message me anytime you like if you want a chat as i am always here,there aren't many occasions that i'm not.

Sylvi hugs to you.xxx

[bruce18 in reply to sylvi]

Hi Sylvi, Arrr thankyou. I like your take and it is lovely you and your daughter can laugh about it, certainly worth remembering. Im afraid nobody asks after me - no support except my husband. On the otherhand i have a neighbour with severe arthritis and I always ask her daughter how she is up at the pre-school - but it has just dawned on me I should pop round - she is lovely and we always chat over the fence in the garden during good weather.

Thank you for the heads up about the groups on facebook and it is nice to know you are there anytime thankyou again Sylvi - Claire x

[jeanabelle in reply to sylvi]

Hello Sylvi, I'm new to f/book, how do you go about finding sites. Hope your feeling better each day. Jean. X

[sylvi in reply to jeanabelle]

Just do a search for ra groups. Am i a friend of yours on f/book if not add me. sylvia reynolds and then i will see what i can do for you.xxx

[jeanabelle in reply to sylvi]

Great Sylvi, I'll do that. Your a star. X

[Hidden]

I agree with your sentiments and the following replies, all anyone sees with me is that my skin has become better with no more Psoriasis, as the medication for PsA clears the skin. With the outcome they say I am better, I am fed up with saying what the actual complaint is now as they don't/or don't want to understand. Instead I agree and then say well it's gone internally, which in a way it's true. The way I look at it, if I couldn't get through to the occpational doctor for the Council that I used to work for how do I expect other people to.

But as others have said, we come on here and 'hey presto' like minded people, who don't mind listening to our woes, are friendly and many friends are made on here. And yes we don't even see them, but we know they are here. The best bit of all is they jolly us all up so that you go away to fight another day. xxx

[bruce18 in reply to Hidden]

Hi Georje, I know the feeling - I kind of felt like a broken record. Also I agree with what you say if you couldn't get the occupational doctor for the council to understand then how can we get everyone else to understand. I have to admit I didn't understand fully what my dad was going through who has ra and osteoarthritis; but now I have a better understanding of his needs. He is in a bad way and I really feel for him. It worries me if he does some digging here in my garden - I will phone him up that evening and then the next day to see if he is ok meaning his back,hips, knees, shoulders. He has phoned me and said "phoning to see if you are all right?" so just occurred to me it isn't just my husband who gets it but more so with my dad.

Thank you Georje your thoughts have just made me realise the fact I now have 2 people who understand - sometimes it takes talking through these things for something to click in ones head - Thank you again - sorry I waffled - Claire x

[bruce18]

Hi - thankyou - it is nice to know you are here if I feel lonely and lost again, and you are right I will try and ignore the ignorance and know where to come if it bothers me again - Claire x

[shirlthegirl]

Hi Claire, I suppose in a way i'm lucky as my brother has RA, So we have a good chat about how we are feeling, My brother has had the experience of dealing with people that don't understand RA for 15 years, So he normal gives me the advice and support i need to deal with them, We also have a laugh espeacilly when you get people pertending they care and know what you are going though, if not i know i have the lovely people on here.. Take care xxx

[bruce18 in reply to shirlthegirl]

Hi, yes you are right you are both lucky to have each other with the same disorder and can help each other - or some would say you are both unlucky to both have ra. i have it but hopefully my sister is ok - wouldn't want her to have it. Your brother must have been gutted when you was diagnosed. Thank you for your helpful advice - Claire x

[jeanabelle]

Awk Claire, it is a real bitch isn't it? Your not on your own, we all, everyone on of us, have gone through it and continue to do so on a daily basis.

I have posted on here about the idea of dropping the word arthritis from the disease we suffer from. It won't stop stupid, heartless people from hurting us but it might help.

I was at the local health centre yesterday for my monthly bloods. On the way out I meet two of my cousins and the three of us stood on a group discussing our 'complaints'! What amazed me was one of them had his two knees replaced from austio arthritis and he looked at me as if I had horns when I told him about having Rheumatoid. I had splints on both of my wrists but he just staired at me saying nothing. You would have though he would know better.... But I'm getting used to it now as I have only been diagnosed 3 years and out and about only a year.

Listen, we know what you are going through and we really do care about you and u der stand how all our hurst aren't just physical! XXXX

[Neonkitty]

Dear Claire, you have the very best person on your side ... Your hubby My husband is a star ... a wonderful guy! We all have our own madness to contend with, with the different problems RA gives. I've had crazy times with the pain lately and very down and my husband has kept me going. A couple of dear close friends too ... Two girls I love and trust. I have just had a woman I know telling me all about a guy she knows having arthritis as though I didn't have any problems!!! Same as people telling you their medical issues and not being respectful asking how you are. Gets you down. Also a couple of people continuously telling me all their stresses, and not acknowledging I have just started a new med and don't feel good at the mo and would appreciate a little quiet time. They are thoughtless .. And I can only imagine they haven't any idea whatsoever what RA does to a person. My husband said that people just have no idea unless they live with a person who has it or work alongside them/in very close proximity on a regular basis.

I think I have been quite harsh recently .... Unusually so ... and semi ignored people who have been very unsupportive of me but still expected me to support them despite my recent poor state of RA. What upset/upsets me is the lack of respect. That hurts more than anything. I don't mean I have been rude to people but just not got back to these few inconsiderates. Sorry but they absolutely drained me. I call them "dementors". As in Harry Potter! ;-). Steer clear of Dementors, Claire and stick with the people who give you respect and ask how you are. True friends. When you are a sensitive and caring person it hurts and often dumbfounds when others are not the same. Hard when family members are not supportive I know. Best not to divulge much at all I have found. I feel it's as though they are fed up of me have g it even if I dont talk about it. As though ... You've had it a while now so just get on with it!! I hope you are feeling alright, Claire, and your RA is under control, and don't let them make you feel bad. Sounds like your Dad is now becoming understanding of you given his own similar circumstances.

Love and hugs,

Julie xx

[Hidden]

Hi Bruce,

went to a friend's 60th party a few days back. I've known him for about 30 years & he's seemed cynical about my illness, patronising even. But late at night after quite a few drinks he started talking to me & my husband about it. It amazed me to see the effort of concentration on his face as he tried to get his head around it all - he was really listening & thinking and for once I could see that he was quite distressed about what was happening to me.

It made me realise that I do need to be patient with people I care about who don't seem to understand RA. Sometimes it takes them a while to get there. They have their own problems or they might just be quite reserved or they find illness scary ...... there are so many possible reasons for the shutters coming down - it's not always just hard-heartedness. xx

[TweeterCal]

Hi Claire, I read your post and I agree with what you say. People's fear of the unknown and subsequent quick remarks are infuriating. I think it would help if Doctors agreed to change the name. Some sort of official endorsement.

Relationships change all the time and even more so when you get RA. Ive noticed how my relationships and friendships have changed. The "good" ones have stayed the same. What upsets me is the assessments we get and people ask how often my family visit. I don't know why they ask, Atos, Capita etc. but they do. There seems to be an expectation and its a tad unfair. Your right, RA is not a respected disease...maybe if we got spots or limbs fell off!

Well, I thought I would let you know that your thoughts are not far removed from my own.

Thanks for posting.

Cal

[bruce18 in reply to TweeterCal]

Hi Cal - thats ok - I just had to put down my thoughts as it seems to help :). Like you say it is very odd when people ask how often you see your family - puzzling. It is true about the saying you can learn who our friends really are when we are ill. I have a good friend who I have known for nearly 20 years - others come and go. I don't have time for them now - negative I know but I know who my friends are - still hard though at times. It is a good idea what you say about the docs changing the name of RA - it would help us a lot. Thank you again- Claire x

[bruce18]

Hello all,

Thank you for all your replys - it is a comfort to know that Im not the only one who has these problems. Everyone who have replied have made very good points and given me plenty to think about and ideas to put into practice - thank you all again - Claire x

[Perri]

Hi claire

I totally understand when you say people can be so ignorant about RA

My list of friends has tailed away to just a few, as I can no longer dance & drink like I used to & I am always needing to sit down, as i get very tired. It is also so frustrating when you try to describe the condition & how it feels & they tell you about their aches & pains without really listening to you - or their eyes glaze over in a dismissive way - it makes me feel so frustrated & angry & quite sad.

My husband has been lovely this last year especially, as he can see the difference in me & he will often tell me not to overdo it at home if I am not working, as I used to be like a whirling dervish, dashing around everywhere & not sitting down, now I almost need a nap after a visit to the corner shop after getting a few groceries!

He always comes with me now to get the weekly shop, as I cant push the trolly on my own & pack the shopping, let alone carry the bags! my shoulders feel like they are dropping off even with my shoulder bag these days.

My own family do not want to know & think I am exaggerating,so we dont really see each other much any more & julie - I so totally understand your word dementors! - people who suck the life out of you & give nothing in return - I avoid these people too - as they do leave you feeling drained emotionally.

I even have a friend who has lupus who tells me about her troubles, aches & pains, but just dismisses mine as old age & is not prepared to empathise -so frustrating!

[bruce18 in reply to Perri]

Hi Perri,

I completely understand. Like you I have a very understanding husband. If it wasn't for mine I'd be very miserable. Like yours mine tells me not to over do everything. I used to be like a whirl wind with house work and had a very tidy house but now its not so tidy which really really frustrates me.

I was battling tiredness and looking after my toddler which was really difficult until I told the doctor I wasnt sleeping very well at night because of pain - I was exhausted like you - and they put me on Mirtazapine - it saved me - and now I sleep like a log and do not feel so drained in the day. My tired time is at 1.30pm and so I go and have a shower to wake myself up. Do you have insomnia/pain at night? I would recommend Mirtazapine. I also recently found out that my Salfazalazine my me feel incredibly ill and tired. I have been off it now for 2 months and feel brilliant. I take painkillers for the pain but feel better and will see the Rheumy again.

Like you I have a select few friends and thats it - I stay clear of hassle now because stress doesn't help our RA,

Claire x