I explain how i feel on a day to day basis to someone who knows nothing about lupus and they say "I get that too"! Anyone else relate??

I'm so frustrated when someone asks me about my illness and how it affects me, I tell them how I sleep a lot and have tired days and good days, I sleep all weekend, I have extreme tired spells.... and they say "I do too, that's just normal".

Makes me not know what's normal!!!!

13 Replies

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  • Hello, I am new to the website. Nice to 'meet' you. I haven't been diagnosed with anything yet and have only been poorly since March, but I already know what you mean and your question actually made me smile with relief :) i have a very competitive friend and lately i have discovered she even competes with illnesses!

  • Contact Lupus U/K for a leaflet So you think you have Lupus,and any leaflets that might be of interest.

    As for your friend,don't want to say it!!!

  • To teacherwithlupus :

    You have been diagnosed with lupus. Tested repeatedly confirmed with scientific proof. You are under a doctors care. Your autoimmune system becomes confused and attacks itself. You don't just sleep/rest/lay down ... you are FORCED to sleep/rest/lay down because your DISEASE IS ACTIVE AND DEBILITATING CREATING IMMOBILITY. You don't just have tired days and good days ... your DISEASE PERIODICALLY UNCONTROLLABLY RELAPSES AND REMITS WITH EXCESSIVE FATIGUE MALAISE NEURALGIA ... (fill in the blank).

    If you want others without lupus to comprehend lupus give precise details. Teaching others to respect accept acknowledge the truth of the undeniable scientific proof that this disease is a serious (potentially fatal) disease will advance not only public awareness but also public understanding.

    To natal1a:

    Competitive or attention seeking narcissist?

    It is not about her it is about you.

    You are in a waiting pattern hoping to discover what ails you and what can be done to help minimize your symptoms. Support is what is required. I hope you have others in your life who understand that illness is not a competition; illness is a serious matter of grave consequences. I hope you have answers soon and find relief. Take care.

  • Hey, thanks for your reply. I must say even though I have only been ill for a short time, the thing I am finding the hardest at the moment is explaining it to other people.. Luckily my family have been very understanding and most of my friends have but it is funny that the people closest to you are sometimes the ones that seem to act the weirdest? One of my friends insisted on telling me I am nowhere near as ill as his mum (who has rheumatoid arthritis) and told me I am making no effort to get better and that perhaps if I had a mortgage and children that I would try harder. Which was helpful. And another friend seems to resent the fact I am off sick on full pay as she pointed out there are people with REALLY bad illnesses (guess mine must just be me moaning then and not a real illness) that have to force themselves to go to work because they have responsibilities. And w.hen I tried to explain that when we go on holiday in a couple of months that I may not be able to go out at nights (which I dont mind as would rather have a relaxing holiday after this year), she pointed out that I have been doing aerobics and going to the gym (which I have forced my myself to do just so I am doing SOMETHING, I certainly do not find it easy) so therefore I shouldn't have a problems going out dancing all night! But luckily I have to say they are the only two people that have been unsupportive. The friend that told me I would be ok to go out dancing is the attention seeking one, whenever I am feeling ill, she says she is too but has to try and make hers sound ten times worse. Whenever I am getting stressed and upset about work, she is too and when I try and support her and ask her why she says she 'can't quite put her finger on it'. I guess I find this frustrating as I can easily 'put my finger' on a few things that are getting me down right now. Sorry to rant!!!!

  • To natal1:

    Classic cases of denial. The people closest to you care the most for you and do not wish you to be ill thus they deny the possibility that you may have a chronic potentially fatal disease.

    Your friend with the mum with RA needs to put a lid on it and have more compassion. It’s apples and oranges. You are ill and in the process of being diagnosed by doctors for an unknown disease. It is not a matter of giving a better effort or being more responsible – the doctors would have rooted that out if that was the case. It is a matter of being diagnosed and gaining the proper treatment.

    Your friend who believes others have REALLY bad illnesses needs to be informed that in fact … to put a razor sharp point on it … if you do indeed have SLE … SLE is one of the most fatal forms of autoimmune diseases. SLE is a REALLY bad illness.

    Your holiday is YOUR HOLIDAY. Use your time off as you desire. If you do not wish to party all night long then don’t. What are you your friend’s pit pony? You are not a lemming. Protect yourself, stay as healthy as possible, avoid triggers, and enjoy your holiday to its fullest.

    In bad times TRUE friends shine floating to the surface like lifeboats … FALSE friends sink like stones.

    You’ve no need to apologize for stating truth. Consider it a reality check. You’ve a few stones in your life. Let them sink so that you can float without frustration and hang onto your lifeboats for support and compassion.

    Be well soon.

  • WOW, Kudo's to you!!! Thanks for saying that!! I wish you could talk to my family! Love, Krisdy

  • WOW!!! Thank you! You have written down what I want to say to people at work about my lupus and how it effects me. I just might copy this, if you don't mind. I'm pretty rubbish explaining how I feel, and now I have a woman I work with who just says, "Well I have that as well, oooh it's not nice is it?"

    Heaven has sent me an angel..........................happy happy happy :)))

  • To schnauzersmudge:

    Spot on! Feel free to copy it. I am glad what I wrote can help you explain your lupus to others.

    I'm laughing at your co-worker's response "Well I have that as well, oooh it's not nice is it?". I truly hope she does not have lupus; but if she does "oooh it's not nice" is putting it mildly indeed!

    Happy x 3 ?!? WOW! Brilliant. Happy I helped you be happy.

    Carry on strong.

  • Contact Lupus U/K and ask them for some leaflets and a CD, for you and your family to watch& read

    For someone who has not go Lupus its hard to understand but with the Lupus leaflets and C/D they will have a better understanding.And if you can afford to join Lupus U/K (£10) it will be the best spent money they keep you informed of any new developments and you also will get to know who are the contacts in your area.

    I am sorry to go on about it but that's the best area to get a full understanding about Lupus.

    I full endorse what Nouska is saying.

    Love & Sunshine

    Jan x

  • I know how you feel!!!!! I had my cousin just say that to me this pass weekend! and I have had this over 4 years! She said I am probably depressed!!! I said I have LUPUS! and she just looked at me! Ya know EVERYONE understands breast cancer and no one would every say to someone fighting that O I feel like that too. Unless they had it. But lupus no one understands except us that suffer from it!! I feel like I have leporsee That illness back when Jesus was here. Know one wanted to be around them, no one understood them. I dont know about you but I have lost so many friends and family members. God bless you! Love, Krisdy

  • To Krisdy:

    when lost for words ...

    My autoimmune system attacks itself. Yours does not. My disabling chronic potentially fatal disease is more real than your imaginary medical expertise.

    You are certainly NOT a leper (although there is nothing wrong with being a leper as Leprosy is a bacterial disease spread from respiratory droplets - a disease is a disease is a disease - humans are frail and imperfect such is life).

    YOU HAVE A VERIFIABLE DIAGNOSED DISEASE. NO DISCUSSION NO DEBATE NO DENIAL.

    You have not lost - those (family/friends) who truly support and care for your remain and those are the ones who matter most. Embrace those who embrace you. Stay strong.

    But on the topic of leprosy :

    It is fascinating to note that a very old drug (Clofazimine) once used for leprosy is now being used for MS (another chronic potentially fatal autoimmune disease disorder) patients to gain immune system control.

    In lupus autoimmune system control is dysfunctional. Medical research is getting closer to controlling what has thus far been uncontrollable.

    How wonderful it would be (or rather I will write WILL BE) to be able to turn off the flare ups. Stop them dead in their tracks. Send them packing. I can't wait. Hope remains alive.

    Bizarre Leprosy Fact : Leprosy can be transmitted to humans from ... armadillos.

    FOR YOUR INFORMATION

    Alzheimer's, cancer, heart disease, and strokes are all caused by an immune system dysfunction. This immunological dysfunction is VERY SIMILAR to an autoimmune disease such as SLE. There is a link. This link has yet to be fully defined.

    SLE (and all other forms of lupus) are chronic disease disorders. There is no denying it. Proven scientific/medical fact. Those who doubt it's existence are fools.

    chronic = persisting a long time constantly recurring

    disease = a disorder of structure or function

    disorder = confused disruption of systematic functioning

    fool = a person who acts unwisely lacking discretion, wisdom, or good judgement - a person denying the existence of lupus

    Be well.

  • Thank you so much!!! reading that was like you are right it is all true! I should not have to explain myself! I have a disease!! That itself is bad enough! and to have to deal with people (fools) who dont know what they are talking about! I am just going to walk out of the room when someone starts with that crap! My time is to important!! Thank you again. Love, Krisdy

  • nouska is a wise owl

    she is right all the way through her rant

    friends do open there mouths and say things that come out without thought to the consequences on our fragile brains

    they underestimate the impact of being ill chromically and what we have to live with.

    i have a freind who is outspoken amd often rude . her classic responSe to me when i say im ofF for an appointment at hospital/doc is YOU SEEM TO HAVE A LOT OF APPOINTMENTS DONT YOU ??

    I SWALLOW HARD STUFFING MY RESPONSE DOWN MY THROAT AND JUST SAY YES WHEN YOUR ILL IT SEEMS TO BE THE NORM TO BE SEEN BY DOCTORS CONSULTANTS DONT YOU THINK.

    IS THAT NOT WHAT THE NHS AND HOSPTALS ARE FOR OTHER WISE THEY WOULD NOT HAVE ANYWORK FOR THESE QUALIFIED PEOPLE IF WE ALL WERE WELL AND DID NOT NEED THEM .

    THEN I REMND HER OF HER ILLNESSES THAT SHE HAD TO GO SEE SPECIALIST AND HAVE AN OP AND TAKE TABLETS FOR A CONDITION .

    SHE HAS GOT OVER HER CONDITIONS AND IS IN A HURRY TO RESUME NORMAL LIFE AND DOES WANT TO KNOW WHEN MY CONDITION IS NEVER GOING TO GO AWAY IS PREOGRESSIVE AND ILL NEVER RUN A MARATHON AGAIN . HEHE NEVER HAVE AND ITS TOO LATE KNOW .

    MY OTHER RESPONSE SHORTER VERSION ANDIIF MY MOOD IS LOW AND I CANT THINK SMART IS

    OH LISTEN TO YOU AS USUAL YOUR MOUTH OPENED BEFORE YOUR BRAIN ENGAGED .

    SHE JUST SCOWLS OR LAUGHS I DONT CARE AS LONG AS SHE GETS THE MESSAGE .

    GIVE YOUR SELF A HUG LOVE YOURSELF ABOVE ALL OTHERS AND BOMB OUT THE FRIENDS WITH UNKIND WORDS FIRE IT BACK IN THERE COURT THELL SOON GET THE MESSAGE . IF THEY ARE TRUE FRIENDS THELL COME BACK AND STOP DISHING OUT CRAP TO YOU IF THEY DONT YOU DONT NEED THEM IN YOUR LIFE .

    KEEPWEL AMD SAFE AND DONT GET STRESSED IT LETS YOUR ILNESS IN

    KIND REGARDS

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