Excuse Me For Saying It, But Lupus Sucks!


May is Lupus Awareness Month! How Will You Spread Awareness?
My daughter Christine has a tee shirt with the above logo emblazened on it, and I have always disliked the crudeness of that phrase. Every time she wore that shirt I would wince and tell her how I hated that expression, but she would just laugh and smile an all knowing Mona Lisa smile. Well she has finally won me over to the dark side.

Christine has been sick for the past six weeks in the throes of a very bad Lupus flareup, probably the worst one she has experienced in a very long time- so long ago that I had forgotten how insiduous this disease could be. Most of the time Chris’ Lupus causes pain and fatigue, with a few odd symptoms thrown in; like dry mouth, depression, swollen hands, cold feet, etc. This time there seems to be some swelling around the brain and Chris is now dizzy, unsteady, and unable to walk without the help of a walker. Her brain is also not processing stimuli properly and she often forgets what she is doing. I told her “Now you know what menopause feels like, but I don’t think she saw the humor in the reference.

The other day she went into the bathroom to brush her teeth and as she held the tube of toothpaste in her hand, she had forgotten what to do next. It took her a few minutes to process the situation and actually remember the simple steps in brushing her teeth. This is a situation I someday expected to experience with my aging parent- not my child, but when Chris relayed to me the incident, we both forced a laugh. That’s when the thought briefly crossed my mind- “Lupus sucks.”

Yesterday, I tried to play Scrabble with Chris, a game that we had always taken very seriously, each vying for the highest score. Chris struggled to concentrate and make 6 point words and it was then that the thought resurfaced- “Lupus sucks.” There I said it out loud. There really is no other word that can best describe the total frustration of never knowing what part of the body Lupus will decide to attack next. I tried to say to myself “Lupus stinks.” or “Lupus really is the pits!” but no other phrase seemed to have the emotional punch as “Lupus sucks.” You don’t even need to add an exclamation point- those two words say it all.

Now I understand why Christine says it alot. There’s a freeing experience in at least acknowledging that something is indeed unfair and really sucks, and after you say it a few times…. you somehow feel empowered to handle life and go on.

So again let me make myself perfectly clear- Lupus sucks.

Thanks for listening.
Article written by: Janet Miserandino, Butyoudontlooksick.com, © 2006
*This essay was originally written in 2006, but has certainly been more then appropraite with my most recent lupus flare.  I felt it was important to re- publish because of  May being Lupus Awareness Month. Thanks mom!

  • Kate

    My Cancer Specialists group gives out buttons that simply state Cancer Sucks. Any phrase that states an Illness Sucks immediately gets a visceral reaction from those who can not see what we are struggling with in order to function. So, in that sense and in my opinion, it is a very useful and more than acceptable phrase. ;D

  • Lupus does suck. I have had it for almost 10 years. People don’t understand that you always sleepy, and since there is no cure, you are always sick. I know I look fine on the outside, but mysides scream something else. It has even costed me my job of 4 years!! I hate this!! I still wonder why I have been “chosen” to suffer with this disease. It does suck, but I’m still here!

  • Sjogren’s Syndrome doesn’t suck, we don’t have enough saliva to suck. Sjogren’s Syndrome dry mops. Thank you, Chris, for this website, and Janet and Kathy for your input on the subject.

  • W.S.

    Lupus DOES suck! 😉 I’ve had this blasted disease for 20 years and I’ve been through a lot. Keep fighting, Christine!!!

  • Rachel Hilton

    What you have written about Lupus can also apply to MS! I have now adopted the saying MS Sucks – cos it does.
    Thank you for taking the time to write these articles, I genuinely enjoy taking the time to read them.
    Sometimes I’m left feeling a little sad but most of the time they make me smile. Thank you.

  • Kiri McNamara

    I love that phrase, As a Lupus sufferer, it does SUCK!! Where did you get the shirt?? I would love to get my hands on one?

  • Kathy Coulter

    For Janet- who reacted to the innate vulgarity of the term “sucks”. I teach middle schoolers, and it’s a favorite verb for them; they would use it freely, except that it is “against the law” in my classroom! We say “vacuums” instead; as in, “lupus totally vacuums.” It means the same thing, we all know what we mean, but it’s less vulgar. Plus, we all have a laugh because it sounds so ridiculous, and that always eases tension. I myself struggle with RA which also vacuums, and I so appreciate the ButYouDon’tLookSick website. Keep on keepin’ on!