Pink Sheep and Living with Lupus

Several weeks ago the Bing page had a photo of sheep in the hills of Ireland with a hint of pink on their backs.  The image of  the sheep reminded me of the ongoing “joke” among some of us with systemic lupus erythematosus about how good we  look.  A phrase that can wear thin on a person after a while, especially if they do not feel well day after day.

JUST BECAUSE YOU CAN’T SEE IT DOESN’T MEAN IT’S NOT THERE

The sheep made me wonder if it would be preferable to have a mark, signaling the world…I live with  Sjogrens  and the effects of lupus every day?  Or is it actually a blessing in disguise that I  look good most of the time?

Early in my diagnosis, a well-meaning friend  introduced me to  new people as Leslie with lupus. After a few times of that I began to  stay clear of her.  That was not how I wanted people to meet me, see me, or remember me.   I am also often reluctant to ask for help, or tell people certain things are difficult for me to do, or that I will pay for it later.  As much as I am able, I prefer being a plain sheep.  While my husband feels I should be  more vocal about my situation and needs,  I cringe at the thought most of the time.

How do you feel about this?  Do you wish people could tell you struggle with autoimmune disease or are you glad that they can’t tell most of the time?  Is it a blessing or a curse looking good? I would love to hear your thoughts.

I know there are those who do not struggle with this issue. You have lupus and it is quite obvious.  You probably wish you had the problem I, and many others have.  I would like to hear your thoughts.

More on this subject next time.  If you enjoy reading this blog, click here to  Subscribe by Email.

Many blessings to you….Leslie Rose K

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4 responses to this post.

  1. Posted by Brenda on October 8, 2012 at 5:09 PM

    Hummm, that is a hard question Leslie! I know I am always told that I look great and as much as I love hearing that I know that they have no clue how hard I struggle at times. I remember years ago, oh I am talking back in my young 20’s a friend of mine was going through some terrible health issues and my mother said that you would never know how sick she was because she looked perfectly healthy. I saw my friend struggle and fight to live and now I feel as us Lupus people do the same. Well as we know, you can look healthy but not be healthy. So how do you answer the question you pose? Well I WANT to look good, but I don’t want people to think that all is good because I look good. I do find that people who really, really know me can tell when I’m having a day that I’m struggling even though I look good. And I guess it is my friends and family members who are the ones that really count in how they view me. Everyone else doesn’t really matter in what they think about my health and how I look. So I guess that is my answer. I prefer to look good knowing that the people I love and love me know my struggles and can see them even though I look fine on the outside.

    Reply

    • Posted by dominateyourdiagnosis on October 8, 2012 at 7:37 PM

      Thank you so much for your input. It is a hard question, one that I am still exploring. You have a lot of good thoughts here. Yes, one would hope that those closest to us would know when we are not feeling well.

      Reply

  2. DYD: It bothers sometimes, but only when I sense the person saying it is telegraphing that they don’t think I really am sick.

    However, there was a time when my lupus was so bad, everyone could see how sick I was, there was no hiding it. I had several coworkers mention months later how many people were worried that I was not going to make it.

    After that, I loved the times when I looked good enough that people would instead say, “I remember how bad it was when you were sick all the time,’ using past tense.

    I make it a point to explain the malar rash, since the art of spreading lupus awareness is getting the point out there that lupus is an invisible illness, and that the rosy red checks of malar rash are a sign of lupus, not a sign of health. LA

    Reply

    • Posted by dominateyourdiagnosis on October 15, 2012 at 11:03 AM

      It is painful when people doubt the validity of the illness or make us feel like it is something we are doing or not doing that is the cause of it. I think that is why it can sometimes be easier to not even bring it up. You do make a good point about using our situation to educate people about lupus. Thanks for sharing your thoughts and experience with us. Thank God you are doing better and able to encourage others through your blog and life.

      Reply

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