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Thread: Lupus Awareness Day 10th May

  1. #1
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    Default Lupus Awareness Day 10th May

    The other day I was getting really upset that people think I can "just go back to work" (which is a 9 hour day, 5 day week in a citrus packing shed, lifting 15kg boxes and standing on my feet all day) and say things like
    "Well, you don't know until you try it!" Well I do know...actually.
    "You ached last season at the packing shed, Vicky aches from work...so it won't be any different." I'm ill!
    "Maybe if you get some fresh air and more sun" Errrr...thats a big no no!
    etc

    I can see why people don't get it. But I'm stuck, as I imagine many of us are, somewhere between trying to prove how ill I am and at the same time trying to think as positively as possible about getting as well as I can and not associating myself with being "an ill person." FRUSTRATING!

    People with cancer don't have to prove how ill they are, people with faling organs don't have to prove how ill they are, people with a broken leg don't have to prove how broken it really is. Why can't people accept Lupus, Fibro, CFS etc? It frustrates me even more as I have always accepted illnesses like these before I even knew I would develop one.

    As a teenager I met a young girl who had CFS and lung issues and her mum (my singing teacher) was explaining to me the battle she was having with the school to "prove" her illness. It made my heart ache to see the young girl curled up on the sofa in her dressing gown, looking the most depressed I have ever seen a child. Not ill, just sunken. She missed school, she wanted to be there with her friends more than anything, but she couldn't manage it. And she was being blamed for "making it all up." I thought, that must feel so horrible, to be accused wrongly and struggling to deal with an illness nobody knew how to treat at the same time. I didn't understand CFS fully at the time, but I could see the problems it caused the girl and her family, and I felt for them. How could anyone not? But apparently many people can ignore and dismiss 'invisible illnesses.'

    I wasn't going to bother with Lupus Awareness Day because I didn't want to be seen as an attention seeker. Very few of my friends even know I have it. But, I'm going to post links on my facebook and see if I can open the eyes of even just one person who didn't understand previously. Partly for my sake, and also for the sake of anyone else they already know or meet who has an "invisible illness."

    If anyone can recommend any links that are good for getting the basic info then please let me know. Also, let us know what you are doing for Lupus Awareness Day.
    Thankyou xxxxx
    I spent 2 years travelling Australia. Check out my travel blog at http://travelpod.com/members/helenlear

  2. #2
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    I was planning on ordering a few items to put up in the salon that I work in, even though everyone in my area knows what has been going on in my life since my son was diagnosed this past August. I do have a shirt that was made for his benefit that I planned on wearing also. Sad that people think that way and don't understand that just because you may look "fine" doesn't mean that there isn't something going on on the inside.

  3. #3
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    Hi Shine,

    I have never been so frustrated in my life. I completely understand feeling stuck in the middle of proving that I am sick and not wanting to completely become absorbed with my sickness. It's almost impossible. I'm afraid it's going to take me running myself into the ground until people truly understand what I am going through.

    As for Lupus Awareness Month, I was reading that May 18th is Put on Purple day. So, at the least I am going to wear purple and also ask my loved ones too as well. It may not be the most outward support, but at least I will know.
    Best wishes,

    M

    Lupus, Secondary Raynaud's Phenomenon, Pernio (Chilblains)
    Plaquenil, Amlodipine

  4. #4
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    OMG I understand exactly how you feel about proving your illness and then having to deal with people who think you will magically get better and you can handle a regular work day like anyone else could. NO, I can't. I'd LOVE to, but I CAN'T.
    I'm 25 freaking years old and I live on disability, and every waking minute I am worried that my money will be stripped from me. I had a start to my life, I was working with horses, decorating cakes, stuff I enjoyed but can no longer handle. I try so hard to be positive and not let my illnesses hold me down and then when I achieve that people think I am not as sick as I say and its just...God...It's like a lose lose situation and it really depresses me.

    I wish my printer would work because I'd like to put up some Lupus awareness stuff too.
    "With gentle hands and the heart of a fighter, I am a survivor!" - Reba McEntire

  5. #5
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    I'm the same age hunniebun...I fiiiiinally got my life back after having a couple of extremely hard years struggling with Bipolar Disorder...came away to Australia, travelled, lived in the back of a van. My partner and I had it made! Now I'm stuck with this, just not getting better. And people seem to think that because I'm young I will get better, because I'm traveling I'll be back at work soon earning money for the next leg, they think that because I'm still here and I haven't gone back home yet that it can't be that bad...

    But if I went home it would be worse. The healthcare leaves a lot to be desired for starters. I'd have a fight on my hands for benefits. Either my partner would stay here to continue her travels (wouldn't blame her) or she'd come back and work her arse of earning a terrible wage and try to support the two of us...impossible! And you know what...I'm not ready to give in yet thankyou! It is bad, but I'm still fighting for now. Going home would break my heart.
    I spent 2 years travelling Australia. Check out my travel blog at http://travelpod.com/members/helenlear

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