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Tara’s Story (Lupus)

Purple Lupus RibbonHi, my Name is Tara. I will soon be 28 years old. I have been living with lupus (SLE/nuephritis) since the age of 14. I’ve never been upset or sorry that I have lupus and I dislike when others feel bad for me. Recently I’ve been dealing with a pretty bad lupus flare up. I grow so frustrated because I hate not having control over my own body right now. And my friends, family and co workers just don’t get it. I know they will never be able to fully undertsand what I am talking about, but it just aggravates me, especially when they look annoyed with me for complaining of pain for 3 minutes of the day. If only they knew – which led me to writing this poem. Enjoy.

Title: “I’m Sorry That Lupus Has Chosen To Call My Body Home”

In the dark quiet hours,
when all others are fast asleep,
Is when I allow myself to feel this pain devour,
me whole, as my tears seem to steadily seep-
through in silence.

I don’t want your sympathy,
I just want you to understand me-

Impossible! because you can never feel the way that I feel,
I don’t ever remember shaking on this life changing deal-

I’ve remained silently strong,
For far too long-

So please forgive me in advance if I complain,
Of my bodies aches and pains-

I’m sorry, I truly am sorry for complaining when; my face and skin is dry and itchy,
when my ankles are swollen, when I feel restless, when it literally hurts to stand,
when I’m tired, when I’m feeling down, when I feel like my bones are broken,
when my muscles are so sore, when I’m exhausted, and the list just goes on and on. I’m sorry!

I’m sick of people rolling their eyes when I begin to whine,
I’m tired of those same people saying, “but you look fine.”

They act as if I’m just over reacting and being dramatic,
If they could only realize the pains of lupus is always set on automatic-

I’m sorry that I can no longer face this pain alone,
I’m sorry that lupus has chosen to call my body home-

I’M SORRY!

P.S. TO ALL MY FRIENDS/FAMILY THAT DO LISTEN TO ME WHINE AND COMPLAIN, YOU HAVE NO IDEA HOW MUCH IT HELPS TO HAVE YOU LISTEN AND TO HAVE YOU BY MY SIDE WITH SUCH SUPPORT. I WILL BE FOREVER GRATEFUL TO YOU ALL. EACH OF YOU PLAY A ROLE IN “MY LUPUS RIDE” AND MAKE IT SO MUCH BETTER!!! I APPRECIATE THAT AND YOU!! THANK YOU!! I
LOVE YOU!

By: Tara Barber
Date written: 09/13/2010

Tara
Submitted 9-14-10

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

2 comments

  1. oh my that touched me so much i had to read this to my husband i defiantly understand that way too much how you feel ….it felt like you was wrighting that on my behalf…thank you ….you dont have to say sorry anymore because there are people that understand what your going trough and that is from a lupus person as well…

  2. Margarita Gutierrez

    I was recently diagnosed with SLE after almost five years trying to figure out what was going on with me. I guess my first symptom was my hair. It started to fall out and no one understood why. Then when I got into high school, that’s when other symptoms were showing up. Aches and pains, fatigue, joint pain and the list goes on! And now 2013, it’s when they finally figure out what’s wrong. I wanna be strong in front of my parents, but sometimes the pain is to much. Night is when I feel the loneliness and all the hurt that I feel during the day and that I can’t show the world. My parents try to cheer me up saying that it will be alright that I will be just fine, but I don’t believe them. How can I believe them when I don’t fully understand this disease myself? I don’t know if I’ll be fine or if I’ll make it through another day. It’s hard when I don’t know anyone who has SLE that can help me understand what I should expect later on or if I’ll live pass my 30. I know that being 17 with this disease has made me feel awkward about myself. About my appearance. I just wish that they knew why SLE affects people. Maybe I would have taken better care of myself. But then I again, maybe God choose this for me because he has a plan and knows that it will work out in the end. Your poem describes how I feel. Most of the time I’m just so tired and wanna give up, I don’t know what to do.

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