lupus oldie

Hi just joined yesterday i have had lupus 4 years now, lots of problems with joint pain, keeping my balance,short term memory loss.

Also stomach problems.

Just need someone to talk to as i have moved home and feeling low.

it gets me annoyed when people say you do not look ill.

I get annoyed when i tell them i have lupus and they say whats that, have inever heard of it when i tell them i have to say it is not contagious i have lupus not leprosy,

Does anyone else have this problem.

30 Replies

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  • Hi ,,Welcome lto a Lovely site and i hope you will enjoy it here..I hate it too when people have looked at me and my skin which is often bad and thought Urghh,,is it catching !!I even heard one lady had a comment ,,"Oh Auto imune,,you mean like Aids is !!How very hurtful is that?People should not comment if they don't understand,and this is why we need to be do as much as we can to raise awareness for this damn disease!(((hugs)))

    Regards

    Dawn.x

  • Hi dawn you are right the amount of people who have asked me is it like aids,

    i laugh but deep down it hurts,as we have just moved i have told a couple of people why i needed a bungalow and since then they seem to keep their distance don,t know why i guess they are ignorant to lupus.

    It is nice to have someone to talk to as at times, i am going crazy with my own company as i live too far from family.

    Thank you so much.

    Lornadoon

  • To have others that really understand! This makes such a difference to how we feel.Knowing other people are there for you makes a lot of difference to the bad days.Here at Lupus uk health unlocked there is always some one to listen and help were they can.(((HUGS)))

  • Ignorance, or just unaware? I do nothing but talk about it they way it informs then and shuts them up. I work in the medical field and if you think the public are bad try some of the people I work with you wouldnt believe attitudes.

  • Hi medic you are right as in February i was in America on holiday and had an accident,the doctor at the hospital had to ask me about lupus as he said he had not heard of it, i was quite shocked at his reply.

    So you are right if a doctor does not know what chance do we have, with the general public.

    Take care xx

  • you risk alienating people if you come on too strong, not always a good idea, but every so often you'll need people that really like to know and then the full explanation is the best way . x

  • I agree, i'm a nhs radiographer and some of my collegues have been unbelievable, i have had to fight to reduce my hours and switch to night shifts rather than days as they are not so tiring...but i have had zero support and comments such as i am cherry picking shifts, when no body wants to work nights in anycase...

  • Hi Jan

    Most people do not want to do night shifts so they should be thankful that there are people like you. My sister works in a hospital and she does nights as this is better for her with kids.

    Unfortunately she has problems when it comes to the clocks changing etc.

    When my employer found out i had Lupus they fired me on medical grounds.

    At first i was upset but now i cannot work,so maybe they done me a favour,

    The only thing i miss is the money

    Take care lornadoon xx

  • (((hugs))) to both you lovelys here!!The amount of people i too have come across who really don't want to no "Dawn",,is so sad!! Lorna,,look us up,,you will not be alone again.xx

  • Hi dawn it is nice to have people to talk to thank you so much.

  • Hi

    Wishing you well in your new home. I also get "you look so well"....I don't think people understand how we feel inside...aching...pain...depressed...fatigue..etc...yet we can glow. Even after explaining to a family member recently during a flare I was told I would be better when I sweated it out!! I actually have given up with non lupus folk understanding. Keeping chatting here instead. Take Care x

  • thanks loopy lou it is the first time i am not feeling sad about moving.

    i have had people trying to tell me to try this and that as it worked for some ailment i now just laugh when people say this to me.

    if only it was that simple.

    Thanks Lornadoon

  • So get you all - even my own Mother said at the weekend "do you think this illness is all in your head" Thanks for the support Mum.

    It's good to know there are other people out there feeling the same.

  • Sorry to hear this,i am sorry for you if your Mother thinks this is all in your head you have no chance.

    Every time i go to the doctors they keep offering me depression tablets which is annoying as i say to them i am in pain not depressed.

    I can understand your frustation,as i have been there.

    take care lornadoon xx

  • well; I have had these situations and learned it is better not to be upfront. People now what Rheuma is , and since this is a rheumatological condition, it is better you explain it is a rheuma like condition. They will understand. I have lived more than 15 years incognito... no one knew, and overall that worked the best for me. I never said anything and when I was ill I just said I was coming down with something. Only recently I had to come out since I had to use my wheel chair more often. Still people think I had an accident, and I don't blame them. Society is not ready for Lupies, and forcing it is not going to help you. Just behave as normal as possible and try to understand their position; It is hard to deal with something you don't understand. If you like to mail me , be my guest. I have in the mean time managed to build a very structured and stressless life with a beautiful garden to retreat.

    Morlobach@yahoo.co.uk

    Keep strong and sane.

    Hugs

    Morlo Bach

  • Hi Marlo

    I did not tell anyone on the estate how i got my bugalow that was done by my sister,we were going for a walk when a resident asked about the dog, we chatted and she said i looked too young to be in a bungalow.

    I told her thank you i like you for that.

    The conversation went to old people who are in need for a bungalow,

    my sister was annoyed and that is how she found out about my lupus,

    i told my sister to keep quite and she said what has it got to do with anyone how you got your home.

    I am a very private person and do not go out a lot,also i am not in the habit of letting people know things about me.

    I am seriously thinking of moving again as i do feel that she might be right i do not use a wheelchair but i do need my stick at times.

    You are right i will just stay behind my front door as i feel that i do not want to talk to anyone at all.

    i was diagnosed nearly 5 years ago but the rheumy thinks that i have had lupus for much longer with the things that has been wrong with me.

    in the past.

    thanks Lornadoon

  • Hi Marlo I am happy for you. I was looking to move to a bungalow but do not know how to go about it, as my flat is council damn with mildew especially in the winter. I have had lupus for over 20 years and fighting as I go along. I am now 51 but my faith keeps me going.

    take care Norma

  • Hi Norma

    I was in a council house that was adapted for my needs three years ago,the only problem was that over a year ago i found i had difficulty going up and down the stairs.

    Turned out i have arthritis in both knees.

    The council said as long as i had downstairs toilet i would have to wait a long time, however they did offer me a one bedroom bungalow,which had stairs also into the entrance.

    They nominated me for a bungalow with Durham Aged Miners hence i now have a two bedroom on the ground floor.

    Also register on the home swapper.

    I wish you luck as i have heard of people in bungalows that some of them are very damp.

    Let me know how you get on, and try other agencies.

    Best wishes Lornadoon

  • Hi thank you for replying I will find out about the ome swapper as you suggested. Keep the faith

  • Hi and welcome this site is brill on chatting to people who also suffer with lupus I was told I had it back in 2000 when I had gangrene in my feet I the found out I had to have a aoirta bypass as the blood flow was not getting down to my toes, I was told I might need my toes removed at 28 I was deverstaed, I recovered well and had a good run, up until 2 years ago, when I had flear up after flear up, I hit depression and a all time low I had to lower my hours at work which made me feel a failure, but I have a wonderful bunch of doctors at St thomas London, they changed my drugs and put me on ainti depressants which I didn't want to take at first, but prof hunts words to me was Kelly we nee to lift your spirit in Oder to lift your health, so yep I went on them, put on 2000 mg microphenlate, 200 mg plaqunil wafrin and few others, took time but getting there stuffer from sleepiness and joint aches and pains, the sad side is But You DON'T LOOK ILL

    I say thanks but you don't walk in my shoes you don't feel my body and your never understand, all I can say is try stay happy, and fight it

  • Hi and welcome to this site. I too have had lupus for 4yrs. I read your post and it was like reading about myself! My balance has been all over the place for a few months now. Ive had a MRI and EEG and now have an appt to see a Neurologist. I think that probably its all to do with the lupus as I think its something many people seem to have. This is a really informative site and I noticed Dawn has told you about Lupus is real!. It is like a family and you will never feel alone. Its someplace that you can go on and just vent if you feel like it, but its also good fun. Look forward to speaking to you on there if you join us. Hope you settle in ok.x

  • Hi to you both,i have problems with my balance all the time last year ended up in hospital as i had to walk on all fours as when i tried to walk i was throwing up.

    It turned out that i had an infection on the brain i have since got over this but when i walk i career to one side do not seem to be able to walk in a straight line.

    Poor dog does not know if she is coming or going when we go for a walk.

    Poor Lenox you seem to have had lupus bad,hope things get better for you.

    Take care Lornadoon xx

  • See where ur coming from Lorna, however working in the public sector I have to be upfront as we operate a sickness policy that could really screw me over, I have been put on stage one several times, now again being referred to occy health as they want to know about my meds, not that I. Going to bloody tell them it's none of there business.

  • Hi I was referred over and over again to Occupational health but they acutally help and my work place had to put things in place to assist me, occupational also advise my work place that I am cover under the DDA so they will have to make reasonably adjustments to sustain me in work.

  • Good for you Medic,it is none of their business.

    Take care

    Lornadoon

  • Hi! I'm new to this group, but not new to lupus. I've had it since I was12 - I'm now almost 48. You're so right about people saying "But you don't look sick". I hate that!! If they could only spend a day in my body, they'd definitely understand that I am sick! My ex-husband never believed I was sick. Even when I was in and out of the hospital constantly, having chemotherapy treatments, and taking up to 40 pills a day!! I have never been in remission, but I guess there's always hope. My sister has lupus too, and she's been in remission for the last 18 years! She only takes Plaquenil and she's fine. Please don't feel alone. There are so many of us out there who totally understand what you're going thru and are happy to give you whatever support you need. I live in the US and there aren't any good lupus support groups near me. Plus, I can't drive anymore. That's why I joined this group. It's nice to talk to others who understand. Take care. :)

  • Hi mjk it is nice to be able to open the computer and someone has sent you an e mail, it is just like talking.

    I was in America in February for a couple of weeks,as i have family over there,i really enjoyed the weather.

    It is a shame that there are not a lot of good groups in America.

    The people i met in America were really nice people.

    Did end up in one of the hospitals and was treated lovely.

    Take care

    Lornadoon

  • Hey Lorna! :)

    I'm a Lupie newbie, I (stupidly?!) told a mum at the school gates last week, well actually she saw my facebook status, as I wasn't embarrassed about my diagnosis (why should I be?!) but oh my god, there's a gaggle of mums who avoid me now, as if just as you said, as if I have leprosy or AIDS and I'm highly contagious... it really shocked me tbh! I guess I'll have to get used to it! One literally recoiled when I picked up her child's dropped coat and gave it to her.

    I felt like shouting 'BOO!' ;)

    The thing is AIDS isn't even contagious unless you're planning on becoming blood brothers!! People shouldn't be treating anyone with any autoimmune problem like they're pariahs it's just malicious ignorance with intent!!!!

  • Hi Blueberry

    Sorry for your ordeal and i know where you are coming from.

    When i was first diagnosed i was working,then i lost my job,the phone never stopped at first and most of my work colleagues rang,i tried to explain what was wrong with me and i think some of them understood.

    The thing was that after a while the phone stopped and one day i was in the supermarket when i bumped into a former colleague we chatted then she asked how my aids was,like you i was stunned.

    Needles to say i have not heard from any of them since that night.

    It hurts sometimes and i have a good cry then think this is how ignorant people are of this disease.

    Now when people ask why i am not working i say oh i have arthritis in most of my joints, and the conversation is ended with oh that is painful, end of conversation.

    Most people understand arthritis but not lupus,as it is i really do have arthritis as well as lupus,double the trouble as my family say.

    What i would say to you now is go to the school hold your head up high and eventually they will speak to you, just give it time.

    Take care Lornadoon

  • Yes have same problem. People will say I don't look ill, that's when I feel like screaming at them that I am although they can't see it. I also suffer from constant joint pain which can wipe me out, although the worst is the fatigue, my boss just can't get his head around why I'm so knackered when I've had 12 hours sleep. Short term memory loss is a problem to. Trying to explain your not contagious either, as soon as you say auto immune disease people take a step back. We have to raise awareness of lupus together.

    Take care x

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