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Thread: My Family Doesn't Understand

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  1. #1
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    Default My Family Doesn't Understand

    Hi everyone,

    I'm new to this website, and also new to this disease. I was diagnosed with SLE and RA in Dec 2011 after my doctor thought I had lyme disease for over a year. What has been the most frustrating part of this is that I feel like my family just thinks I'm complaining. I've caught some rolling eyes from my mother who thinks that I'm just being dramatic. Or my husband has said that I should just take some tylenol and suck it up, and it really can't be "that bad" which makes it the worst for me - the fact that he doesn't understand what I'm going through and isn't being as supportive about it. I'd expect my friends to not understand as much, because I'm 24 and my friends are all in their 20s too, and we're all young, active, in good shape, and have been healthy our whole lives with no ailments or problems....but it's the most frustrating when my own family doesn't understand it or seem to take me seriously. I didn't want to believe it and I wanted to just be able to "suck it up" and deny that these symptoms were actually there, actually real, and actually painful. But I've realized that I can't. I have vented to my husband, my mother and father, and my siblings so many times, but they all seem to think that's not that bad. But the reality is...it IS bad, and it has been life-altering... I can't do all the same activities that I used to and when I wake up in the morning, my entire body is in pain to the point where sometimes i can't even get up. I'm feeling like everything is spiraling out of control particularly since my husband is not being as supportive as I hoped he would be and it has made us fight a lot more. I came to this website because I wanted to learn about what others are going through. I'm not crazy, right? This is for real, right? This isn't all in my head. The pain, the rashes, the tension, the fatigue, all of it is very real and this site has helped me find others who know that it's real too. So, WeHaveLupus.com, thank you for being here to help me come to grips with this and feel reassured.

    Thanks,
    -Ellie

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    LivingANightmare (03-08-2012)

  3. #2
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    Default

    Hi Ellie,

    YOU ARE NOT ALONE!!!! I am going through the exact samething. Just yesterday my boyfriend got upset with me because I wouldn't get up and cook after I repeated stated my whole bodyaches and my knees were swollen. Everyone always says I complain to much and "Girl somethings always wrong with you" Most people (family and friends) don't take my condition very seriously. My mom and grandma are in denial and keep telling me I don't have lupus because my liver and kidney aren't failing. The only thing I can suggest is to try to find pamplets or printouts from webmd that explains the condition and symptoms maybe this will work. It helped for one or two of my close friends but not everyone I really wish I had more answers because like I said I'm experiencing the same thing

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    Default

    there was another thread recently on the same subject.
    it might be good to look at it.
    i know i added a few points that may help, as did others.



    Forum - Systemic Lupus Talk General Forums - Lauri's Lounge - How do I help him understand?

  5. #4
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    Default

    Sorry I just joined this website yesterday. I haven't seen all the threads yet. Just felt like I needed to vent on how frustrated this has been for me.

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    Default

    Hi an welcome to WHL. There is. I need to be sorry. Steve was simply pointing you to more information. It can be found here

    http://forum.wehavelupus.com/showthr...him-understand


    Thanks for finding that Steve!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  7. #6
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    Default

    i'm in the same boat as you!! my husband isn't supportive very much. he's just says" you never feel good"! or just plain wont help in the house etc.. i just try to explain how i'm feeling the best i can. maybe take him to a doctor appointment with you?? my other family is pretty supportive, but sometimes too much..if thats possible?? calling multiple times a day.. asking how i'm feeling.. it's nice they care. but i'm sure they get sick of hearing my complaints.. i'm sorry you're felling so alone..hugs..

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