The hidden illness.

If I had been ill with flu for the last 7 weeks or vomiting, someone may have visited or sent me a get well card. With RA no one has called or come round to check on me. My two oldest friends have never checked on me. My sister lives 8 minutes away and has never brought me anything round.

They all know I haven't been working, am ill, yet because I seem fairly ok and can walk a bit they don't consider me ill.

I feel so alone with this.

My house mate Katie has asked me to leave because she doesn't like me being ill in her house all the time. I rent a room in her cottage. She has never once even made me a cup of tea. My GP friend thinks she must be on the aspergers spectrum because she has no empathy. She can't deal with it so she asked me to leave. Can you actually believe it?

So hopefully my house that I'm buying will be exchanging this month otherwise I will be homeless as well as everything else.

95 Replies

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  • Oh that sounds awful.The whole thing is so unpleasant and scary. I am a few years in and am feeling a little better and have only just got to a place of acceptance regarding (sorry there is not another way for me to put this ) what utter word beginning with b many members of my family have been. I have come to accept now that they don't care about me. It really is only a couple of years in and as you can tell I am angry because I am so hurt. I sense you are hurting too and I send lots of empathy. There is and hopefully for you too will be a bit of an upside; I know who does care and that is something worth knowing. Wishing things get easier for you very soon. X

  • I just don't get it!!! How can you watch someone you care about, in pain, and then do nothing. It's beyond belief. I just need to concentrate on the people around me that care. Forget the others.

  • Yes, I think you are right. I knew my husband was a lovely man but he has been a star. It has made me appreciate him so much and friends who call in or call on the phone. But you notice those who are cold and un empathic and in a way it's good to know. Can be surprising though.

  • Sorry, replying to my own comment but I remembered something said by a woman who has had severe RA all her life and she said something like you learn who you can trust to be there for you and who you can't . I have let go ( mentally in the case of family ) those who can't as I just don't have the energy.But it means I have a few lovely people in my life and that's a good thing.

  • That's what I need to focus on. The good ones. X

  • Don't tie yourself in knots over it, you need to concentrate on yourself and try to relax. I know it's hard but it doesn't help your RA while you are upset. They may need time to accept your diagnosis and understand what it means for you. Hope everything settles down soon for you . X

  • I do find myself in more pain when I'm upset and stressed. Ugh.

  • .

    Maybe sharing with them the "Spoons Theory" πŸ₯„πŸ₯„πŸ₯„ story ( healthunlocked.com/nras/pos... ) if not already familiar with it, may help them understand your situations, Jules13 (& apbrooke)?

    The mere 13-minute video πŸ“Ή may help jumpstart them? πŸ€”

    (Sometimes the 'visual' concrete πŸ₯„πŸ₯„πŸ₯„ example helps them comprehend the disease & your unwellness. πŸ€” )

    And, should 'worst come to worst' & they're still not grasping it over time, show them your forum post (this very post), so they can see πŸ‘ πŸ‘ that what you're experiencing is 'par for the course' β›³οΈπŸŒοΈβ€β™€οΈ of this illness.

    You're definitely not alone & only loving request πŸ‘©β€β€οΈβ€πŸ‘©πŸ’‘πŸ‘¨β€β€οΈβ€πŸ‘¨ from them (your nearest & dearest) that they try to comprehend what you're going through & try to be there for you when you need their support β€” physical πŸ’ , emotional 😫 , spiritual πŸ‘» .

    Fingers 🀞🀞, toes πŸ‘£ , & eyes πŸ‘€ crossed they'll gain deeper understanding (empathy 😌 ) as you go along & will be there for you when you need them most. πŸ™ 😌

    (A 'learning curve' πŸ“ˆπŸ“‰ that merely takes time β³βŒ›οΈ , genuine concern πŸ€” , & patience 😌 to fully comprehend.)

    .

    Very best wishes to both of you. πŸ™ πŸ€ 🌺 🌞

    .

  • Wow, that is an emoji crazy answer. Love it xx

  • .

    πŸ˜‚ 🀣 πŸ™ƒ

    Yes indeed . . . πŸ‘πŸ‘

    Gotta love πŸ’“ emoji's ❣️

    Modern world's 🌐 version of ancient Egyptian ⚱️ hieroglyphics ♒️ . 😳 πŸ€”

    Emoting 😿 & humourous πŸ˜† simultaneously πŸ”€ . πŸ‘

    Wishing you the very best, Jules13. πŸ™

    Take good care, dear lady. πŸ™ πŸ€ 🌺 🌞

    .

  • Humourous ☹️

    Humorous πŸ™‚

    Pedantic βœ”οΈ

  • I used to hate emojis but I like your style. I used to do pictograms letters to my grandparents and this is similar. Now you have to do the pics instead of the words and see if we can figure it out. X

  • .

    WπŸ˜Œβœ¨πŸ’«-ing . . πŸ‘ good πŸ€ @ πŸ†• 🏠 .

    .

    Easy peasy, πŸ‹ πŸ—œ .

    .

    πŸ™ πŸ€ 🌺 🌞

    .

  • Oh blimey. Wishing sheep luck at your new house. Sheep, ram? Ahhhhhh. Ewe. Brilliant.

  • πŸ™ƒπŸ”¨ . . . πŸ‘

  • Now you've lost me x

  • .

    "Hit the nail on the head": en.m.wiktionary.org/wiki/hi...

    πŸ˜³πŸ”¨

    .

    😁

    .

  • Ahhhhhh

  • I ❀️your Dali 😺picture.

  • .

    Svetlana Petrova's πŸ‡·πŸ‡Ί 'The Persistence of Meowmory' ⏱ with 'fat 🐈' Zarathustra 🌟, who also sings πŸ™€ 🎢 & acts 🎭 : healthunlocked.com/nras/pos.... πŸ˜‚

    .

    πŸ™ πŸ€ 🌺 🌞

    .

  • Hahaaaaaaaaa. Brilliant. Cat music. The mind boggles!

  • Perhaps they just don't know what to do.

    People often ask me how I am, I just say fine. Previously I would tell them exactly how I was. I think this might have been too much for them. I think I might have complained too much.

    I don't bother mentioning it any more. I really don't think it's that people don't care (in my case) folks just don't get it.

    There's a lady who lives just doen the road from me. Bless her socks, she never has anything positive to say. I've noticed how folk avoid her like the plague. She's a kindly soul really, but she does get you down with her constant complaints. I was worried I'd become like her. I just shut my face now! :-)

  • Yes I've done a lot of that lately. Had very little support from a certain lot .. even some family when I had a massive flare when my Mum passed away in 2015 and I was hounded by my awful SIL who was executor. Two years of it. I find some people can't get their head round the fact it isn't something they won't get better and think after a month of do to should be fine. Fortunately I've have a small circle of lovely people .. about ten people who understand and I feel entirely at ease with,. The rest .. ah I'm looking for an emoji with two fingers on it!! 😜

    We're here for you Jules. xx. Here for each other as its scary especially at first. 😘

    Good luck with your house and hope it's all sorted very soon.

  • Me too. But then I worry about being alone in a tumble down house. Needs a lot doing!!!

  • Is it big enough to take a house mate? Solve being alone and also help with the Β£. xx

  • Think about it Jules.....before you had the RA pain did you ever imagine how awful it could be? I know I didn't.....& eventually I had a reply that I trotted out when I thought someone was being dismissive about my pain. I won't write it down because it's very rude.

    But when you are in a calm place think about what you'd like to say....& just say it...... It probably still won't get through, but you'll feel a hell of a lot better & sometimes having thought about what you said, people do come back & become a bit kinder!

  • I had nooooooo clue what it was like. No you're right. I'm just so tired of explaining.

  • I don't think there's an easy solution to this. There are so many invisible conditions - and so many visible ones where people fail to respond appropriately.

    And, some people do lack empathy. And others know themselves well enough to realise that no matter how much they wish otherwise, they just can't cope with sickness in others.

    A surprising number of people here seem to have stable relationships. I say surprising because it used to be said that if the 'average' divorce rate is 31%, that of partnerships/marriages where the woman has a chronic illness is approx. 75% (it's lower when the man has a chronic condition). This might indicate that people (including women) are more willing to give care to men but less so when it's women who need the care?

    If it's not too intrusive, when you made specific requests for help or a visit from your sister and friends - did they say why they refused?

  • No I've never actually asked for help.

  • Thank you for bringing this topic up! I have been married (embarrassed) a couple times, each time as soon as I got sick they w were gone! It was all sunshine and roses while I was working and supporting them, but that was a joke!

  • That's awful. Your spouse is supposed to be the one who is there for you. I am sorry this happened to you. I do know of someone whose wife left him almost as soon as he was diagnosed with bone cancer. She left him with 2 dogs and a teenage daughter with some learning and emotional difficulties. I saw him the other week. He has lost his leg but gets around well and his daughter was also there with a husband and dear little toddler. He had to get rid of the dogs but he was doing ok. Such is the human spirit. A wonderful thing.

  • 😒

  • I'd say it's a weird phenomenon, but it plainly isn't because it's so common, Mandy8175

    As an add-on to this is the comparatively recent finding that it's not unusual for men who've been married several times to end up contacting their first wife who then assumes the care for them in situations where the men become ill and are without a partner.

    I do know people who can't cope with illness in others, and to be fair to one of them, he was completely upfront about this before the wedding (but his partner always hoped that this would change). Others feel guilty about their lack of support for chronically-ill partners but it isn't something that they can influence through sheer will power or a desire to do the right thing (some have but not many).

  • I am currently engaged to a wonderful man, he has been in my life for 5 years, and we just got engaged on August 1st, 2017. He had some eye issues and subsequent surgeries in his right eye. He is a veteran so we had to travel to the nearest VA hospital 60 miles away every month for the last 2 years and counting. He lost most of his vision in that eye, no lens, and a transplanted cornea. He is amazed that I have helped and nurtured him even with my health problems! I told him that that's what partners do, we have to take care of each other! He supported my daughter and I for a year before my disability pay came through!

  • That's wonderful. Amazing! I've got a great one like that too. πŸ’•

  • Congratulations to you both! Let's hope he's a keeper & you've kissed your last frog. 😘 🍾

  • I hope so too! Besides, mtx would limit the frog kissing, too high of a chance of warts!🐸

  • Ha ha, yuck!

  • Congratulations! You two sound like a good team and I wish you all the very best

    J

  • It's true that chronic disease sorts out your friends! I have been fortunate in that respect, maybe helped because when we returned from living abroad those who I'd not seen for 11 years were concerned about the changes from the pre RD old me that they knew. This opened up conversation & enabled me to explain to the intrigued what I'd been diagnosed with & had been living with for the previous few years. Not that any of this helps you but RD is known as an invisible condition, actually 'Behind the Smile' was the subject of NRAS awareness week this year, this link explains nras.org.uk/ra-awareness-week, also this may be of interest nras.org.uk/news/nras-colla...

    Some people just can't handle anyone who's 'not well', thinking of your friend, have you been able to explain & has she understood what RD is & how it's affecting you being newly diagnosed & your meds not properly working yet? That you will improve given some time? It does sound daft to us but is she aware you're not contagious, it's just the odd way of saying she doesn't like you being ill in her house, you're not spreading bugs around! Maybe if you can have a cuppa the two of you & show her any one of the videos, that might help her understand if you've been unable to get through to her? Hopefully it won't be long before you can move into your own home but you'd probably still like to have her as a friend, I presume anyhow. Do you think it would help? The same for your other two friends, are they not intrigued why it is you're not out & about? Have you been able to explain why if they have asked or have they just left you be?

    I'm afraid get well cards aren't sent to people with ongoing illnesses, it's not a get well sort of thing, there's no end to it, I wasn't sent any nor would I have expected them to be honest. If I had a sister who lived close I would have expected her to call round, ask if there's anything I wanted or needed but I don't have one so missed out there! Is she normally a concerned sort of sister or is this normal?

    It's a huge learning curve being diagnosed, I think you're beginning to understand. 😬

  • I've explained my illness to all my friends and family. Very carefully to make sure they know how it will affect me short term and possibly long term. My sister even remembered my father having it in his 50's and him being so helpless. Does that mean she has helped me? No. Has she always been like this? Yes. So I should know better I guess. She's not going to change and suddenly become a lovely caring sister so I should focus on the ones that do help and support me. The thing that drives me up the wall is that my parents always defend her. She has always been the golden child that does everything right and even when they see how she is hurting me by physically being so close yet emotionally so far, they make excuses for her. It's exhausting.

  • I don't think you are whingeing . This is a scary and unforgiving condition with no risk free solution and that is a lot to try to get your head around and when family refuse to be there for you , even if they have been unkind in the past, it comes as a nasty shock to know that they do not care about you. I have cried a lot about my brother who lives in Canada but who has been completely uncaring and less so about my mother in law who is also down the road who has been the same as your sister as my husband goes away a lot . There are strange parallels in our situations. And that may be why I feel empathy. It hurts.

  • Well, speaking as someone who has no siblings but does have an H who's brother was a 'goldenboy' I'd say you'll never change it! I'm afraid, as you probably know, it can make them somewhat selfish, knowing they'll never do any wrong in your parent's eyes. All I can say is my H has learnt over the years to run with it, to not expect anything that way you're not disappointed. Now both his parents have died the issue is no longer there but he'd still rather they were still with us.

    You're right, focus on those who are concerned about your well being, those who you'd care about if the shoe was on the other foot!

    Just seeing your comment below, only you can make yourself a victim, you recognise it so do something about it. Not meaning to sound glib but save your energy, you need it elsewhere now. There's absolutely no need to apologise for whinging.... you've big changes going on & we've all been there!

  • And now I hate myself for being such a victim. Poor me poor me. It's vile. I apologise for whingeing. Xxx

  • One of the strengths of this forum as you can be "poor me" here. We've all been there.... it's no fun.

    However, on the bright side, I am now a much calmer, more tolerant and accepting person than I used to be. And I appreciate little things and people more. I cringe when I remember getting annoyed at (not old) people blocking the pavement because they were walking so slowly. Now I think eek! perhaps they had RA.

  • Haha, I used to be a quick walker but am mindfulness personified now. I do everything really slowly. My husband is brilliant. The other day he was following me up the garden and made me laugh by suddenly saying "Chop chop" ( meaning get a move on ) He's a good partner because he uses humour but is always there if you need him.

  • You're a better person than me, H. I'm a lot less tolerant of other people's ignorance and selfishness than I was. I'm a right crabby old bag on occasion.

    J

  • I doubt it - I was mega-impatient and crabby before, so have probably ended up as normally crabby....

  • At somewhat of a tangent...

    One of my grandmothers had RA and associated CHF. When my mother was about 9 years-old, her mother was immobilised in bed and she had to give her mother a bed bath and help her to use a bedpan. My grandmother was crying with humiliation and, in my mother's hearing, quietly prayed for death as she felt herself to be a burden to her husband and children.

    My mother was so upset that she gathered up the wash cloths, bowl etc. and left the room, with the door slamming too behind her because she couldn't catch it. She then proceeded on her way to sort things out.

    Meanwhile, the slamming of the door had knocked over the bedside lamp and, to cut a long story short, the room caught fire. My grandmother was then terrified that by praying for death, and neglecting to add that it should just be her alone, she'd brought almost literally raining fire and destruction on her family.

    Calling on all of her favourite saints to come to her aid, my grandmother surged out of bed, and beat down the fire, saving her home and family.

    Yeah, of course she 'whinged' again - but apparently she always told that story as a cautionary tale of being very specific what you wish/pray for. :)

  • That's brilliant. Love it xxx

  • You're not whinging. That's what this forum is here for! I can totally relate to you with regards to your sister. I used to be really close to my sister when I was younger, but because of one thing and another we have drifted apart over the years. It has hurt me so much that she hasn't been there for me, or even texted to ask if I'm ok. Speaks volumes in my mind. Something like this really shows who you can rely on in a crisis. Take care.

  • I reckon its not whinging if you have a good reason to. Those who gripe on about a sore toe, a simple cold or such like are whingers, not you. No self-hate allowed! You need your energy to care for yourself. Huge hugs

    J

  • Hi Jules 13, You're not whingeing. It's a debilitating disease process. But hopefully you'll start feeling a bit more like your 'old' self soon with treatment. I know its easy to say don't worry about your sister/friend, but its hurtful and selfish that they don't even try to help you. Unfortunately a lot of people are like this...UNTIL....something happens in their own personal space, possibly some empathy may then appear.

    Look after yourself and can you get some assistance from local health authorities for housework etc. ? I'm don't know how assistance works in the UK.

    Be kind to yourself and you are NOT whingeing... everyone here supports you. xD

  • I suppose the question I've asked myself is what do I expect from people. Actually, when I thought about it, it is very little. I'd hate it if people did everything for me. And if there was a crisis I know people would be there.

    Neighbours helped me out only the other day when I couldn't walk my dog. I did have to have the courage to ask for help though! Sometimes I am mt own worse enemy. In fact, when I have asked for help it's been forth coming.

  • Happened a lot with me too like that Jules. I think many people who I knew thought it was just a few aching bones that would soon feel better! It's true what others have said that you soon find out who you can count on and who doesn't want to know but some people do want to help but don't know how. Invite your friends to see you if you don't feel like going out at the mo. I bet they'd come round. xx

  • It's horrible in the begining. Friends & family just want you to "act normal" . A good friend of mine told me ,

    "Sue, you are so smart. If anyone can get over this, it will be you, You will find away to stop this nonsence."....I don't talk to her anymore.

    A 40 year friendship has also ended. She was just so fed up with me not being able to go out for diner & dance with our husbands. She was just "so sick & tired of my excuses"...... We've been friends since we were 12.

    So I live with my hubby & little dog. I am thankful that we have a strong loving relationship....the only thing that annoys me now is my dog begging for treats lol :)

  • That's awful. X

  • That's dreadful! Wishing you peace and knew we here are always s good set it two of ears! Totally get your point though, lots of folk think we have a touch of arthritis like Granny😬

  • I think your house mate is despicable. Thankfully you are getting your own place. Fate is an odd thing and someone who will take care of you is round that corner somewhere for your. You can't let people who can't be bothered take you down.I don't give up on my maternal daughters as I love them. One is coming for tea on Tuesday. They annoy and hurt for not being caring and being there for me but I guess they have their own lives and family and worries.I keep trying but now I am not ringing them so much.I wonder if it's because I have such a wonderful husband who cares for me that they don't bother.

    It's so true that the disability can't be seen much to others. Some people are born carers and others takers.

  • I think that's exactly right. I'm one of life's carers. An over abundance of empathy. I cry when I read the paper or hear a sad story. Some people just don't have that. Such is life. So I must not keep thinking that all people care. They just don't. X

  • Oh Jules you are in a terrible situation...but I'mafraid the attitude of your friends & family seems par for the course with RA!

    I was diagnosed 18 years ago & I have yet to receive anything except"Oh yes my granny has that." by way of sympathy.

    All I can suggest is you concentrate on looking forward to moving into your new home & immerse yourself in making it just how you want it....close your ears to Katie.....what goes around comes around you know!

    At least you will be able to relax without worrying about what your housemate mate is saying when you move in..........it should be a happy time for you & it's only a few more weeks...so hang on in there.

    Good Luck wth the move.

  • I'm hanging. I can't wait to move to my new house. It's dilapidated and I will have no furniture but it will be mine! I do need a bed though, not sure I can push myself off the floor!

  • Ask around Jules...a lot of people may have a bed they are thinking of getting rid of!

    In my first house I took what second hand furniture I was offered....even French Polished a slab of wood & stuck legs on it to make a coffee table!

    Just move in & muddle on.....everything will sort itself out when you have your own front door!

  • I've done that to the last few places I've had and this time just wanted to do it properly, not look like a muddled junk shop!!

  • Being practical what choice have you got right now Jules?

    Presumably you haven't got a Money Tree, so you either accelt a few essential items....like a bed...you can get great stylish duvet sets from Asda for under Β£25......then a couple of chairs & a table& as your RA becomes better controlled you can get back to earning & now the place will be YOURS, & you can do exactly what you like with it.

    Just take it one step at a time. Moving house is always stressful......so don't add to it by wanting the perfect House Beautiul in the first year.

    When I bought my first house I didn't go near a shoe shop for two years, but I had a B&Q loyalty card!!!

  • Yes you're totally right. Thank god I have bedding and good pillows, it's just the bed I'm lacking as my removal men accidentally threw it down the stairs!!! I will totally manage. Just need heat as there is no boiler and all the carpets had to be taken out because of carpet moths. So new boiler Β£3500 and new flooring for whole house Β£3500. Ouch.

    X

  • Now think...you don't need to carpet the whole house in one go...I always sort my bedroom first then I can disappear up there with a tray of goodies & forget the rest of the house for a while!

    Plus if you are going to paint you don't want to be on tenterhooks about ruining new carpets do you?

    But you do need a boiler...especially as you are moving in just as winter approaches...but find a good plumber. Don't be persuaded by the big utility companies to buy from them. They quoted my neighbour Β£7,000....local plumber did superb job for Β£4,000 & that included radiators for a 4 bed house!

    Often people at Freecycle will have recommendations for tradespeople.

    When you are feeling up to it check on the professional sites of plumbers in your area & see what is available.

    Start looking forward to the move....if you try to stop worrying the RA could quite likely calm down a bit!

    Now start making lists! I love lists....never get to the end if them, but they make me feel in control!!!

  • I'm a list freak too. First boiler, then decorating, last thing floor. Won't ruin the carpets with painting after!! My floors are cement though so have to do floor. It will be freezing otherwise. Brrrrr.

  • Have you looked at Freecycle if you put a wanted sign on there you will most likely be offered all sorts of things. You need to look on the site for your area. It also saves too much going to land fill. Good luck for your move. Xxx

  • Yes good idea. Thanks xx

  • If you are on Facebook many say they are without furniture etc and many people are prepared to give freely. You can always replace for better when you get settled and get things bit by bit.hope you will be ok 😍

  • Good plan. Nothing a good bit of paint can't hide. X

  • Freecycle may be an option just to get you started.

  • Good idea xx

  • I agree. Some people can't be around illness and are really intolerant. Others don't want to 'get lumbered' with us in case they have to help on a regular basis. It's a lot like bereavement when people cross the road because they don't know what to say to you. With us, I think some feel guilty about their own good health watching ours decline. Whatever, you soon learn who your friends are. I decided very early on to speak my mind and sadly that led to me despatching some friends who were insensitive. Their loss!

    Keep your eye on the horizon Jules. I divorced a wealthy but unempathic husband, lost a whole life doing that and was alone with 3 children in a completely foreign place but I met and married a marvellous man who loves me and accepts all my limitations. I'm happier now than I've ever been. And I would never have dreamt that would happen.

  • This is what happens, unfortunately. Its not just our disease either. Some people cannot cope with the suffering/distress of others whether it's because of illness, bereavement, divorce or tragedy in their lives. Perhaps it's because they don't know what to say, are not empathetic, have their own troubles or are scared that whatever it is is contagious. There are some who will simply 'ghost' out of your life or actively abandon you. Those who stick with you are worth gold. Wishing you all the very best

    Jan

  • It's 5:30am and I've tossed and turned all night because I finally broke down and took prednisone.

    I've been in the worst flare. On Saturday, I couldn't get up. I told my friend/business partner person. I even sent a photo of my swollen hand.

    I expected him to call or even text to see how I was feeling. I felt incredibly helpless and alone.

    Many people just have no idea how badly this "invisible disease" makes one feel. I literally broke down in tears from the pain.

    In my day-to-day life, I am a strong woman. I try to manage the illness; it weighs on me that any relief does not come without consequence, and the "treatment" comes with a myriad of bad side effects.

    With that said, it can feel like no one understands the daily, chronic pain behind the face.

    I'm glad I found this forum.

  • Me too x

  • Bless you, I hope things get better for you, it is horrible at the start, you are in pain, scared and nobody seems to understand, of course they don't they haven't experienced anything like it. After months of have you tried glucosamine, oh I've got that in my fingers, if you're so Ill why have you put so much weight on (steroids) and the corker,maybe if you went back to work it might cheer you up a bit! I came to the conclusion that I was alone and had to get on with it, my sister once passed me in the street while I was walking my dog (no one else to do it although my brother lives next door!) I was crying with the pain (completely unknown for me I'm not a crier) and to!d me off for being out, no mention of help or empathy at all. I now do not mention my illness to anyone at all. It does however get better, the most unlikely people have turned out to be complete angels just having a couple of people who understand makes all I he difference. Just know that on this forum we understand and are here for you let the rest go, its just not worth it. Hope things improve for you.

  • Omg. My parents do the whole chipper thing all the time. "Have you worked this week darling?" No mum, because I can't hold a pencil, or drive, or hold a computer mouse. I'm exhausted and I feel like I have flu. My head hurts and I'm dizzy. I feel sick all the time. I can hardly get out of bed. So no, I'm not working right now.

    "Maybe you should try it again darling, might take your mind off things!"

    Yes mum.

  • Lots of responses to this post Jules. Your post about talking to your Mum is very frustrating. It reminds me of a Dilbert cartoon about a guy telling his Mum all about how horrible his job was but the mum really just wanted him to just say "work is fine Mum". I am three years on the journey with my daughter who has JIA. She suffers terribly and I have experienced what you describe. There are many people who I might have thought would be more caring or understanding but they are not. People are caught up in their own world and don't really want to hear about pain and suffering - unless it goes away quickly, that is acceptable! There are good people in the world though and like others are saying you do find out who true friends are when you have to travel on this difficult path. I wish you very well, my daughter is now enjoying the meditation app that you recommended by the way! For whatever comfort it is you know by this forum that you are not alone. I hope you can feel the support of this group of people here to help you through this time

  • That's the one! Cheers

  • I feel super supported on here. It's saving me to be honest. Xxxxx

  • Oh dear, unless a person suffers with RA no one knows what we go through. We always play it down try and carry on so people can't understand why we can't do things, when I was a Town Councillor I went through a period of not being able to write, a fellow councillor stood up and said I was being rude because I was tapping my fingers, I was doing it because of the pain as a distraction. That woman didn't know what was wrong with me, it's just so hard at times. I now don't tell anyone that I have RA because they just say Oh my Granny had that, so I give up.

  • I'm still needing a 'dislike' button. What a rotten, lousy experience. Huge hugs

    Jan

  • Thanks xxxx

  • So so sorry to hear of your plight. I think when you have RA we try and be normal so people don't realise how we suffer. I do hope your house goes through and you soon get better from your flare up.

  • Is the first flare up the worst? Actually don't answer that!

  • Bless you sending massive hugs and a virtual cuppa lol. I know what u mean though ppl that don't suffer from RA think it is a bit of joint pain and don't realise how ill it can make you feel! Think your GP friend may be right...hope you feel better soon Jules x

  • Thanks luv. X

  • Good to read your post,coz you're saying it how it is! Bloody pain is invisible and steroids make u look ""well"... Wish I got a pound for every time someone said that to me!! It is a fuck of a disease but can't let it beat u!! U do find friends that understand,few though. Lots find illness difficult to deal with and some,you've just got to see when your well...!! New house sounds like FUN...a project...I like projects...take your mind off the shit... I'm getting a ridgeback puppy and going to do agility classes!!!!!!!!!..thankgoodness for painrelief😜.. Good luck with your house...can always find free stuff if u look. And find a NICE housemate!

  • I looooive Rhodesian ridgebacks. Gorgeous dogs. Yup freebies until this shit is over. X

  • "I'm getting a ridgeback puppy and going to do agility classes!!!!!!!!!..thankgoodness for painrelief" - Apologies if I'm the only one who is wondering if the agility classes are for you or the puppy? Tho' I've a lovely image of the puppy copying you if it's you :)

  • Haha...no having already got two dogs and knowing that I am laughing in the face of psoriatic arthritis by getting a ridgeback,figured I could JUST about manage pointing a dog to go over and under some obstacles with a few little runs inbetween ( maybe!). ...watch this space...crafts next😜

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