Faking Lupus?

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

Last time in Pink Sheep and Living with Lupus I asked a couple of questions.  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?

Here is what a few of you said: 

  • Brenda prefers to look good, knowing that the people who love her, know her struggles, and see past the outward appearance.
  • One person, only wants the people closest to her to know about her illness, but is quick to share her fibromyalgia story with those needing empathy and encouragement.
  • The Lupus Adventurer likes to use the Mylar Rash to educate people about “the invisible illness” lupus. It does bother her sometimes when people do not believe she is really sick.
  • One person does not like using a motorized cart at the store.  They believe people will think it  is because they are overweight and out of shape.
  • One woman says it hurts when people  imply it is something  she is doing, or not doing, that is the cause of her  illness.  She says it can be easier to just not  talk about it.

Living with systemic lupus, Sjogrens, and fibromyalgia is challenging enough most days, let alone to feel as though we have to defend how we feel or don’t feel.  Some of these comments show  how  people judge by outward appearances.

When my daughter was much younger she looked at me in disbelief  and a little disgust when I could hardly walk upon exiting our vehicle.  Why you say?  Because just the stop before I could walk almost normally.   My own daughter thought I was faking it.   I had to  get beyond my hurt feelings and educate her.  Now grown, she is very familiar with the unpredictability of the illness.

Very few people know what lupus is, let alone its symptoms.  I have answered many questions about lupus  and Sjogren’s because most women are genuinely interested to find out about these diseases.  So, instead of getting a little frustrated when people tell  me I look good, I will begin using that as another chance to educate someone about lupus.  How about you?

Back to our question.   Overall, it seems people would like those around them to know when they are not feeling well and need some extra help or grace.  When people cannot detect what our status is, it is important for us to effectively https://i0.wp.com/toddlerontour.com/wp-content/uploads/2011/01/work1.jpgcommunicate our needs. Depending on the situation, looking good can even have its advantages.

As always I welcome your input. Thanks to those who took time to comment or write to me.  I pray God will strengthen you.

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4 responses to this post.

  1. Posted by Brenda on October 29, 2012 at 8:04 AM

    All the issues everyone feels is so right on! I can say that I’ve experienced them all at some point. I never went to the doctor to complain because I did look good, I could get around although at times it could be difficult, it would leave and then I felt as I had imagined the whole thing. So what could I go and tell a doctor?! Until finally a doctor saw that things weren’t as they should be and pointed me in the right direction. From this direction another doctor picked up on some things and she consulted with yet another doctor. This new doctor finally came up with my “label”. So now it really doesn’t bother me that I look fine and healthy because I know the journey I went though to get to this point. I also know the journey I still have to go, but through the grace of God I will make this journey. I don’t get mad at others because they just don’t know and it is up to us “Lupus” people to help them to understand and to educate them. I am old enough now that I don’t have to answer to other people and really don’t care what they think about me anymore. Had I went through this journey when I had been younger I would have felt intirely diffenent. Age does matter. With age comes wisdom and that is huge. So I say if it is someone that is important to you in your life, take the time to explain to them about Lupus. If it is someone who is just being unpleasant/mean does it really matter what they think??? The old saying is “don’t sweat the small stuff”, well people who are like that is the “small stuff” to me and I just don’t sweat it.

    Reply

  2. Great post!

    Reply

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