I have not been writing much about the lupus lately.
Actually, I have been trying to run as far away from lupus as humanly possible.
The problem is, that Ms. Lupus follows me wherever I go.
And she also has managed to keep me from running.
She has forced me into bed rest for 18 to 20 hours per day.
I find it really hard to avoid depression when the lupus gets this bad.
So today I am looking over a huge pile of laundry that is going to take me hours to fold (I have to work very slowly because of the fatigue and shakiness)... and the television is running (because I get so lonely during the day being cooped up at home)...
and of all things I am watching the Tyra Banks Show.
The Tyra Banks Show
And I don't even know why.
I kept telling myself I don't like that show.
I am totally hooked on Tyra's other show America's Next Top Model, and every season I hate myself for that.
I think I am being frivilous, that maybe I should be reading a book or doing something else during that weekly hour I spend with ANTM.
But, here's the thing... very early into the run of this show (it is now on Season 7)... the show featured a beautiful young lady (Mercedes) who happens to have systemic lupus.
The show addressed the issue very well, and I will tell you this...
seeing a beautiful model battling with lupus was extremely validating.
Many of us with lupus do not look sick.
We don't look like drop dead gorgeous models either...
but, we really do not look sick.
Maybe this should be a relief, but the thing is when you have such a serious health condition...
it is really hard to interact with people because they do not SEE what you are dealing with.
Out of sight, out of mind.
Those of us with an invisible illness like lupus often hear:
"Gee, you don't look sick."
I am sure that some well meaning people mean that as a compliment, but what many of us with lupus hear is:
"You are a hypochondriac."
"You are a faker."
"You really aren't that sick."
What people do not realize is that systemic lupus is very, very hard to diagnose.
Many people wait YEARS for a diagnosis.
Years and years of being invalidated...
of being challenged for feeling ill...
of being told it's all in the head.
So any dismissive remark is magnified one thousand fold.
"Gee, you don't look sick..." hurts a lot.
It reverberates all the years of being ignored, beaten down by the medical system that was supposed to help, and all the family/friends who did not offer support and believe us prior to diagnosis.
So...
there I was in front of the t.v. today...
feeling worn down to the nubbin and seeing an 18 year young lady with lupus on the Tyra Banks show.
THANK YOU TYRA!
And even better, she did a special clip of a daughter and her father. The father has lupus and knows his life span has been significantly shortened.
He didn't look sick either.
So, now I am starting to really, really like this Tyra Banks.
I want her to do MORE of this kind of television.
About educating people, about helping others, about the injuries caused by angry hurtful words.
Less with that hoochie mama show stuff, and more substance.
Yes, please, Ms. Tyra...
RESOURCES:
But You Don't Look Sick?
Mercedes Scelba-Shorte: Information from Answers.com
Mercedes Joins Tomiko As LFA Spokesperson
1 comment:
Cool.
I don't know much about Lupus, but I will read your links.
I do know about being ill and being misunderstood by those who don't know what's up with you.
Very frustrating indeed.
And I do know about the chronic fatigue.
Also very frustrating...with so much life in the head, body not willing.
And don't feel guilty about loving aNTM.
I LOVE IT
(partly because I work as a makeup artist sometimes, I guess, but I am GLUED.)
You will find if you watch her talk show often enough, that she more often than not, tackles important issues.
She also tackles subjects not often covered anywhere else.
It is occasionally fluffy, but she's doing a good thing, and helping women get power and control in their lives.
So she gets my vote for that.
Dj Tracy :D
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