Dear Lupus

Dear Lupus,
I feel like I'm stuck in a co-dependant relationship with you. Like that abusive partner that you know you'd be better off leaving, but something has you trapped with them. Except for me, I really don't have a way out. I hate you for what you've taken from me. I hate how you force me to stay home, and cause distance between my friends and me. I hate that I have to lie to those I love who expect so much of me, and tell them that our relationship is going okay, when you and I both know it's not. I hate that I don't know how to ask for help. I look in the mirror, at my face, swollen from your toxicity...the drugs, the exhaustion toppled by inability to sleep, and I cannot remember the last time that I saw myself looking back. I wish I could turn to others as easily as they turn to me, but I know that nobody will ever understand what I have to live with and why I can't just "get better" and move on. "But you don't look sick". Looks can be deceiving, and the show must go on. As the famous line goes, "inside my heart is breaking, my makeup may be fading, but my smile still stays on...the show must go on." I can take a sick day from work, but I can't take a sick day from life. The show must go on.
Dear Lupus, my smile is about to break.


Words cannot explain how powerful your message is!

Thank you for this letter to lupus. I am going to copy it and send it to the next person that tells me "just try a little harder, get out there and enjoy life."

I am in bed most of time thanks to pain, swelling, fever and fatigue. Just a short trip to the grocery store for necessities cause so much damage in my legs that I am sick for days. Only those of us who know lupus can understand how devastating this disease is with all of its twists and turns. George

I also copied this letter and plan on doing the exact same thing!

You've said it perfectly. That is my feelings exactly. I am so tired of hearing you don't look sick. Over the past 8 Months i have gone from 184 lbs to 116 lbs and I am 6 feet tall. How on earth can people say that looks healthy.

I read this as though I could have written the words myself! Every word you wrote is exactly how I feel and what I go through every day! It’s what we all go through. Thank you for putting your thoughts Into words. Can I borrow this?

Of course you can. I know it's not exactly positive, but I just needed a safe place to vent today. Share as you like.

Lee Carter said:

I read this as though I could have written the words myself! Every word you wrote is exactly how I feel and what I go through every day! It's what we all go through. Thank you for putting your thoughts Into words. Can I borrow this?

that's exactly what this is - a safe place! I have poured out my heart and soul here - so many wonderful people who know what I feel - really helps!

Very well put!!!

Very eloquent. Communicates totally. Thank-you very much. Kaz xo


WOW! I read this during work today, and showed it to my co-worker. She read it, and she said that's nice. Even when 'normies' try to see our world, our life, they don't understand. When I read this, I didn't think it was 'nice', I thought, how sad. Sometimes, we need to get the sadness out of us - let it out. " I know that nobody will ever understand what I have to live with and why I can't just "get better" and move on." Not true. We are LWL and we understand. We share your pain, your heartache, and what was taken from you. We also share your love, your faith, your joy and your triumphs. We hear you, we understand you, and we love you. Lupus can not take our soul.


Hello dayzeerock,

What an outstanding contribution of a such a form of Lupus being your daily partner and your life can only revolve around it.

Like Jan said...such a powerful message to every member on LWL to consider in this view.

Thank YouSo much for adding such a gifted piece of work :)

AMAZING words and painfully honest thoughts! I'm right there with you and please know that we are here for you. I just celebrated my 9 year SLE Lupus diagnosis, on October 10, and have wanted to give up over and over again. My rheumo is my Angel and I'm lucky to have him on my side because he refuses to let me give up.

My flares are horrible and my depression is beyond severe, but my mission is to continue to fight so that we can support each other and spread the word and find a cure.....this is what keeps me going every day.

Love and hugs,



Your having a bad day and you are pissed at what this disease has done to you and your life. Honestly I would worry if you werent mad, sad, angry. Vent away we have big shoulders. :)

God Bless.


Thank you for this letter…it’s such a powerful message …love it!!!..

Hey Julie,

Writing Poetry when you're sick, that's a great idea. I have trouble even keeping a journal. When I'm home at night, I'm too tired from the day. My energy level is higher in the morning, but I just don't have the opportunity right now with work and my pup.

That would be a good idea for a Group - Poetry in Motion or something if you up to sharing?


jujubeee said:

There's going to be up days and down days. Just like lupus, they come and they go. Expressing yourself is critical to your well-being, it's your coping mechanism.

And I agree, it's fine to share it with us here, we all "get" you! (like some family and friends never will)

I write poetry when I'm sick.

Like Scarlet O'Hara said in "Gone With The Wind", "Alas, Tomorrow is Another Day!!!!"

Much Love and I'm glad you shared, Julie

Mia, you are truly not alone!! I am right there with you. I too am looking for a new doc and am having the same issues. My hands and feet are just miserable!! You go to bed with a headache and pray that after sleeping you will wake up without one but you don’t!! You wake up feeling like a 95 yr old and can barely move and the thought of putting your feet on the floor and standing is brutal. My mind races with all of the things I would like to do or get done but my body won’t allow me to do them. We do the right thing and go to doc and leave even more frustrated!!! My current doc seems only interested in treating the disease and not the symptoms!!! You look for guidance as to where to go and you get none!!! You call these rheumatologists offices and they either want to see all your records before they even decide if they will give you an appt or you call and it’s a 6 month wait!!! I wish us both luck in our search for a new doc and some relief.

I couldn’t have said this any better, I feel the same way.

Very touching....your saying what I think all of us want to say.. thank you!

Hello Mia,

If you mean a discussion...could you please say the heading for it and i'll find out for you.

Terri :)

Mia said:

Was my post deleted?