It’s hard to explain what lupus is to people who have no idea what it is and how it feels to be in a flare that makes you feel like you’re a prisoner in your own body.  I wake up afraid of what new symptom awaits me, what new side effect from either the medicine or the disease has been manifested in my body, and has decided to reveal itself that day.  Sometimes it helps to hear other people explain their experience when the words escape you; it’s best to let others stand in the gap.

 

The Mighty teamed up with the S.L.E. Lupus Foundation to ask their community how they would explain life with the disease to someone who is unfamiliar with it. Here’s some of what they had to say:

How would you describe lupus?

 “I have told people that sometimes the simplest way to describe it is that I am allergic to myself.”

 

 Lupus is losing yourself. 
Lupus is taking it day by day.
Lupus is a thief of joy and overall health.
Lupus is dealing with side affects head to toe.
Lupus is finding yourself wishing for the days before “you were sick”.
Lupus is a mystery.
Lupus is real.
Lupus is my diagnosis.

 

“Lupus is unpredictable. Lupus takes away the ability to be who you ultimately want to be. Lupus makes life miserable, frustrating, difficult and lonely. Lupus gives you strength in ways you never thought you had, but takes away that strength at any possible moment. Lupus destroys lives. Lupus is frightening, impossible, depressing, careless and a cruel mystery that is invisible to everyone around you. Lupus has taken over my mind, body and soul. Lupus has created a person within myself that I absolutely hate. Lupus is my worst enemy, that I love with each and every single day. Lupus has taken over my body and shows no signs of ever leaving. My name is Valerie, I wear a smile on my face and say I’m doing fine, even though I’m crying inside, in so much pain I could scream, so scared knowing what each day could bring, lupus is losing gobs of your hair, losing friends and family who do not understand. Lupus causes you to have multiple doctors, medications, and even more health problems. Overall lupus Is the worst thing that has ever happened to me in my entire life.”

 

 “Lupus is a daily reminder that you can’t take life for granted. 
Some days you feel unstoppable, able to ignore your symptoms and not feel planted. 
Lupus is living day to day as someone who doesn’t appear sick but is in constant pain/fatigue of an invisible disease. 
Living with lupus is fighting to just live normal, never a life of ease.
When you see me out attempting to feel normal and whole again, make no mistake, I will forever be condemned.
I will not stop fighting to win my life back. 
Lupus won’t keep me from staying on track. 
Living with lupus has made me a fighter, a little bit stronger, and reminds me to hold my family tighter.”

 

“Those unfortunate enough to suffer from Lupus need not to be singled out – they need people around them who will understand, encourage and help. It is an illness that is not always obvious although it can be in a lot of cases. One of its main setbacks is fatigue and this really is hard to understand – how can someone feel too tired to get out of bed, try remembering when you had last had a bad case of flu did you want to get out of bed – well that’s the feeling without the flu. I have watched the pain from twisted joints, the after effects of steroids and chemo, I have also watched the joy on the good days. Lupus is a what it is -the best way to understand it is to get involved with those who suffer.”

 

“Lupus is a test of strength. It is learning how to live each day no matter the consequences. Lupus does not understand I need to get out of bed; it challenges you to sit up, put your feet on the floor, and stand. Some days you win, some days you lose, but you never give up! If I have learned anything in my 25 years with Lupus, it would be that when those I knew gave up I had to say good bye. I know the cost of giving up and I have too much to accomplish. So I sit up, I put my feet on the floor, and I conquer each day!”

 

“Lupus has taken my active life in so many ways. I can’t complain, I am still alive and in incredible pain and the exhaustion is overwhelming. I have just dropped off the Earth to many of my friends, just can’t keep up. Guess what? I have excepted this and have moved on…not happily”

 

“As a child my father said I was born tired…I will never forget that. I fatigued quicker than any of my friends, have stomach aches and vomiting since childhood. But carried on. As I got older symptoms worsened, became more complex, involved more organs. Finally a diagnosis, I’m not crazy after all. The passing out, blood clot in my abdomen, kidney issues, IBS, migraines, and more all made sense. Now to explain it to others, indescribable. The overwhelming fatigue, missing special occasions, work, family and friends not understanding. I pray for all of us and an understanding from others. Compassion. Just be there. Thank-you.”

 

 Lupus is an UGLY THEIF!
It robs you of your energy.
It robs you of your hopes & goals you had once set.
It robs you of your time with family & friends.
It robs you of your employment ability.
It robs you of your positive image of yourself.
It robs you of your happiness with all the daily ailments that come with the diagnosis.
It robs you of you, it changes you into someone you no longer know. This ugly thief, has broken into my body & stolen my life from me & I am helpless, trapped inside while it attacks & destroys me from the inside out. 
It has broken into my kidneys, bones, joints, spleen, lungs…It has tried to break my mind with depression…..I will not let it succeed! Lisa’s Lupus Lookout is on the scene! 

 

“Lupus is a battle between your body and your mind. If you’re not strong enough and keep a positive attitude, your body will win. It’s like your life depends on a rope you’re holding really tight (taking medication, asking for permission at work for regular doctor visits, eating healthy food, exercising, getting enough sleep, avoiding stress, avoiding sunlight) and knowing that if you let that rope go your life will go down. It’s getting up to go to work in the morning even though you still feel tired. And there was also a time in which Lupus was an economic problem because my husband and I struggled to buy medication and feared what would happen if I didn’t take it. Thank God that’s no longer the case.”

 

“The flu x10 with your joints hurting like some has hit every single joint with a hammer and it hurts from inside the bone to outer surface then it swells ! But it’s not the flu! 
It’s now just you!!”

 

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