Saturday, 27 October 2012

Just Seeking Attention?

I wanted to share with you a comment that was made on yesterday's blog post:


The very next time I read a blog, Hopefully it does not fail me as much as this one. After all, Yes, it was my choice to read, however I actually believed you'd have something interesting to talk about. All I hear  is a bunch of moaning about something that you can fix if you weren't too busy seeking attention.
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I'm not planning a direct response to Anonymous here, because let's face it, making fun of someone who has a website about their sexual dysfunction is just way too easy.

What I want to look at is the statement: "All I hear is a bunch of moaning about something that you can fix if you weren't too busy seeking attention." I have to admit, I'm indebted to  Anonymous for putting so succinctly an issue that people with lupus really struggle with. 

We don't look sick. Well, much of the time we don't look sick. There have been times I'm sure I've looked like a semi-animated corpse. We have random aches and pains, ranging from mild to severe through to "Oh God, just let me die already!" which can change from day to day. We often suffer from overwhelming fatigue. We avoid sunlight because it makes us sick and causes rashes. Many of us have food intolerances. We get brain fog, which makes us appear stupid even if we're normally quite intelligent people. Oh, and quite a few of us are really clumsy - inanimate objects like walls and floors attack us and we drop and break things all the time. That's without any of the major, life-threatening issues of lupus.

And guess what? All of those things are invisible. No-one else can see our pain. No-one else can feel how utterly exhausted we become from doing some basic everyday task.

My ex-husband often told me I was lazy. (I wasn't diagnosed back then, I just got exhausted really easily for no known reason.)

Because we don't look sick, there are people who think we are hysterical, attention-seeking, or moaning unnecessarily. 

And there are people who think there is an easy "fix" for lupus and other autoimmune disorders.

I've had all sorts of unsolicited medical advice from people who are not doctors and don't actually know what lupus is. The advice ranges from we cause our own autoimmune disease, to drinking lemon tea will fix it. Someone has recommended I take low-dose naltrexone (a drug used to treat drug and alcohol addiction), even though it hasn't been approved as a treatment for lupus in any country on earth, and the research is at such a rudimentary level that it's years away from being proved one way or another. The unsolicited advice lupus patients get covers the whole range from utterly useless and ineffective to the downright dangerous.

When it's a stranger, like Anonymous who wrote the offensive comment, we can laugh it off. It might hurt a bit, be a little confronting, but really, it's just an ignorant person spouting off. 

When it hurts most is when it's a close friend or a family member, someone we were counting on for support.   

Yes, it is a challenge for the people who love us to support us through the bad times. We actually know that. We often feel bad about that. I know I feel guilty about what a lousy mother I am, and when I was working about how the work I did for my congregation was so much less than they deserved. None of us want to be a burden.  But when it comes down to it, I didn't choose to have lupus, nobody chooses to have it. I live the best life I can with the limitations I have - which is what every other lupus patient I know is doing, too. 

And those people who do love us and stick with us through the bad times: they are God's most precious gift to anyone with lupus, or any other condition like it.

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6 comments:

  1. Well, the first thing I would like to say is : when you don't know something, you shut your mouth, you look, you ear, and you learn. If something is hard to understand, you ask. If this guy had read closely your blog, he would have understood what is lupus and what is life with lupus. Secondly, if you write a comment (which is more a value judgment), at least you could have the courage not to hide behind anonymity.

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    1. It's OK Claire, it was a great example of the attitude many people do have towards invisible illnesses, and a great excuse to talk about that attitude.

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  2. Very well said Iris! I forwarded a link to some lupies I think will truly appreciate what your saying and enjoy your blog (like I do)

    You know, you nailed it, I think it's that " one minute fine, one minute sick" thing that really makes it hard for our loved ones to get what we're going through. Of course the "you don't look sick" thing is a roadblock all people like us with invisable conditions face on a daily basis.

    Thanks for writing your blog. There is nothing in the world more comforting then to know that someone shares your special thoughts, that they are not unique, you are not alone, and that you have a bond with someone who is going through the same issues and just trying to manage their health and their lives as best they can.

    I can't wait to check out your books and more of your blogs. I like that you write often and that your blog is always relevant.

    Sincerely, and Gentle HUGS, Julie

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    1. Thanks Julie. So often we can feel like we're alone with this horrible illness - yet, we actually do have so much in common.

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  3. It appears to me that this was just some spam comment. That domain doesn't even work. No need to get worked up over something so silly anyways.

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    1. Hi Nerdgirl,
      This is probably spam, but I used it because it's an issue people with invisible illnesses come up against a lot - real people (sometimes people who are very close to us) who do believe we're just hysterical.

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