Dear Lady Gaga: a Love Letter from a Lupus Patient

 

Dear Lady Gaga,

I just finished watching your interview with Larry King on CNN. If you knew me, you would know that running to the computer and vocalizing my thoughts to family, friends and even to you is nothing unusual! I have chosen to step up and “out” (so to speak) about my life with Lupus. Sometimes my story of Lupus is positive and sometimes it is negative, but in the end it is my story. If by sharing my story, it means that at least one person does not feel alone, I feel blessed to have been given the chance to help. 

Many times I have heard from readers of my website or my writing that I have typed words that they could not speak aloud. Some have sent email messages and letters telling me that I have given a language of understanding to their support circle. As wonderful as that is, I still am the same girl, and many times feel very alone as I write at my desk. It seems I can help others, but I find it hard to help myself. 

I want to thank you because tonight you put a “face” to something that I try to give a “voice” to. I watched your interview and waited anxiously for what I had heard might be a discussion involving you and lupus. Well, to my delight, Mr. King wasted no time and jumped right to the million dollar question. 

a-picture-of-lady-gaga
Note: For my readers who might not have seen or heard the interview here is the transcript: 

Gaga: I’m okay. Thank you, Larry. How are YOU?

Larry: I’m okay. You look great… there was a story about lupus or something. Do you have lupus?

Gaga: You know, lupus is in my family. It’s genetic and… um… and the truth is I don’t show any signs, any symptoms of lupus but I have tested borderline positive for the disease. As of right now I do not have it, but I have to take good care of myself.” 

 

Miss Gaga (or should I call you Lady?), I have written countless paragraphs on the topic of lupus, but in your three sentences, you sent the world abuzz about Lupus. You immediately got people talking. Finally, I was the one who felt heard, validated and not so alone. Now, I “get it” when I think of the people who have thanked me, and now it is my turn to thank you.

To date, there has not been one celebrity to bring as much discussion, focus, and awareness on lupus as you have. Most celebrities want to “look” perfect and do not want to have their name associated with a specific health issue. In the interview, you answered the question with grace and a bit of “personal respect”, and I appreciated that. The world doesn’t need to know your business, but addressing the issue rather than side-stepping it helped more then you will ever know. You spoke on a huge media platform about a disease that I struggle with constantly. You are glamorous, creative and a showstopper, but for a few minutes you were right alongside me and I was not alone in my Lupus fight. I love you for that.

Your openness about the disease is good for whoever tunes in to the interview. 

Those who knew nothing about Lupus will now at the very least Google the word Lupus out of curiosity and hopefully read some informative and accurate information.

  • Your fans (little monsters) can also become educated about this cause and be a dynamic and enthusiastic group to champion lupus awareness.
  • For me and for millions who live with lupus you validated a very “unknown” and sometimes un-believed disease. Unfortunately in this world, some people don’t acknowledge things that don’t impact their immediate existence, until they hear about it on television.
  • Lastly, for those like me who have Lupus, you have become a beacon of light for this dark disease called lupus that is often misunderstood, and is in desperate need of attention. 

I will now admit that I am one of your “closet” fans. I listen to your music when it comes on the radio and sing along as if there was a stadium full of screaming fans in my car. I dance around the kitchen with my 2 year old daughter as she giggles the words “baby gaga”, and I smile. I watch the award shows and admire and envy your ability to be yourself, push boundaries, and most of all have fun doing something that you love. I admit I had never purchased an album or concert ticket previously, but after seeing this side of you, I immediately went online and bought your cd

– I even passed on the temptation of searching for free downloads! I want to support any celebrity who supports those with lupus.

I didn’t realize, until I started reading about you tonight, that we have more in common then I would ever think – me a stay at home mom and writer, and you, a superstar. I am from a good Catholic New York Italian family and we both went to New York City High Schools. (I went to LaGuardia Performing Arts). Your Aunt Joanne died of Lupus; my Aunt MargretAnne is living with lupus for years. Both of our Aunt’s have obviously touched us deeply as my aunt helped me get diagnosed.  Even before you became a signed musician or worldwide star, you acted like one. Even before I was an “official” writer, speaker and lupus advocate, I acted like one, starting with one article, and one follower (who happened to be my mom). You are known for saying “I want to change the world one sequin at a time” and I make my personal mantra to change the world one person, one word at a time.

I was “borderline positive” for years before I received a proper Lupus diagnosis. I am so happy that you have had no signs or symptoms of active disease, and I hope you never do. I do want you to continue to work with your doctor and be monitored for lupus. I want you to know that according to both the Lupus Alliance of America and the Lupus Foundation you do not need a positive ANA blood test to be positive for the disease; you need only four out of the eleven criteria to be diagnosed. No single laboratory test can definitely prove or disprove SLE.

I want to be clear I do NOT want you to have Lupus. I do want you to know that I personally, as well as millions of others with Lupus, thank you for bringing attention to this very “unknown” disease.

I wish you the best of health on your tour. I want you to keep making music, keep people thinking creatively, and most of all, just keep being you. Thank you again for the “three sentences heard round the world” that brought attention to lupus and helped me not feel so alone.

I hope you never have lupus, but if you do, I want you to know that you have a new fan, and a Lupus friend to talk to. You can contact me anytime!

Love,

Christine

PS- I would love to interview you about you, this lupus scare, your Aunt Joanne, or anything else you would like to talk about when you are in NYC.

©2024butyoudontlooksick.com
  • Litel moster

    Ya lo e dezidido, kiero ser medic@ para poder curarte… te kiero mostrua!! (L) (L)

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  • Gwenn

    YOU ROCKED IT!!!!!!

  • thanks for writing this. your words are always inspiring.

    and @desiree it is a myth that all lupies have the rash. it actually (well statistically in germany) is one of the lesser symptoms
    (excuse my english sometimes it gets rocky )

  • Desiree

    Thanks for writing this Christine! We do need more attention to this so overlooked disease.

    Just a reminder – you don’t have to have a butterfly rash to be diagnosed, either! I was diagnosed in 2003 and have not yet had the rash appear on my face. I was diagnosed after matching my other symptoms with several positive ANA tests.

    Thanks again!

  • Amy

    Thanks for the link to Lupus symptoms. I haven’t looked in a while. I had a positive ANA 2 times but after being told for nearly 10 yr that’s what I had, they decided I didn’t have it. I do have about 6 of the symptoms on the list, which is an update from what I knew & something worth showing to my MD. They keep taking blood tests & saying that my ANA is normal & therefore I don’t have lupus, I just have fibro. I may have fibro, but when you go out in the sun & it hurts your eyes so badly you can barely open them with polarizing clip-ons, & you come in with a butterfly rash & 10/10 pain, I’d say fibro isn’t the only thing you have. It’s probably discoid lupus, not systemic, b/c of the way it’s presented over the years. But with this list, I can ask my doctor once again…she agrees with me but is looking to only lab work; this will show her she can have other items to support the diagnoses I got in Scotland in the 80s. If I have lupus, the treatment is going to be a little different, & I need to see to it to prevent further deterioration of my health.
    You’re great, you know that?

  • Dale Joyce

    Great letter Christine. You do write very well.
    I was diagnosed in 1982, when the internet said the life spansaid 5 years…….I have been a rollercoaster ride most of my life.
    Alot of old friends shunned me, guess they thought they could catch it……
    I hope Lady GaGa never has to experience what I have gone though. Maybe now,LUPUS will have a powerful voice

    May God Bless you

  • Melissa

    Loved the interview and the letter. To say this was a publicity stunt she doesn’t need it-shame we have to prove our disease to anyone esp to one another! I was “borderline” for a year before my diagnoses, so I can relate. Be nice kids, it’s a long road ahead.LOL

  • I was embarassed watching this interview! How do you have borderline lupus! Seriously, either you have it or you dont! What a publicity stunt…they say all promotion is good, even bad…but seriuosly, dont connect Lupus and Lady GaGa together….shes not for real!

  • smiley face clip art

    I love Lady Gaga. Contrary to most products called artists out there Gaga really has talant. Her performances and costumes are all top notch. Hope i can see her live again soon
    Love Jenn

  • Sandy Goodfellow

    Thank u Christine…..that was beautiful and from the heart!! I have been a fan of yours and a fan of Lady GaGa for a long time! Seeing these two worlds combine is amazing…..and soo wonderful!! This monster is very very happy 🙂 My oldest daughter n I are going to see her in concert in august, and this makes me even more excited to see her in person! I totally agree with what Anita Shaffer said in one of the previous statements……I also do not have Lupus, but I have several invisible chronic diseases and ANY awareness is GOOD. I agree that Paula Abdul had a wonderful opportunity to take the reigns n run with RSD, but she didn’t. Like u said, if people just take the time to educate themselves that is a huge step; whether it be about Lupus, fibro or RSD, that is why i just LOVE ur website because u include so many unknown invisible diseases!! Thank u so very much for being OUR ambassador <3
    much love,
    sandy "spoonless monster"

  • Kate

    Thats a great letter, I hope she responds, but I doubt she will. I am not a fan of lady gaga, I have met and worked for her and am glad she brought the much needed attention to such a terrible disease.

    I have other invisible, some undiagnosed illnesses (lupus has been brought up in the past but I am missing the butterfly rash so my doctor moved on to other things), and was glad someone was at least doing something to help.

    Though I still question how sincere she is with everything.

    Best of luck christine, beautiful letter.

  • Very inspired letter Christine,
    Thank you, thanks LadyGaga a lot, we need more attention about Lupus.

    xoxo

  • Christine, this is so beautifully put. Tears are streaming down my face right now because I can feel the joy and the happiness you feel because Lady GaGa has spoken to the world about Lupus, even for a brief moment. All of the little monsters of the world now KNOW what lupus is, and I am positive that they, as well as others like yourself, will work together to gain awareness about Lupus. You, Christine, are truly inspiring to a little monster like myself. Thank you for writing this article, it was very raw, emotional, and pure. Thank you.

    XO

  • Vh-1 had a TLC Behind the music.Tionne “T-Boz” Watkins spoke of her Lupus condition years ago. My heart went out to her..I was totally unaware of the disease..Yes, Lady Gaga has brought this out in the open..to help others..you help bring awareness..thanx!

  • linda

    You rock.
    Lovely letter – I hope to God she sees it, reads it and takes it to heart. To do any less would be a crime.

    linda

  • Anita Shaffer

    Christine, Thank you for your Letter to Lady GaGa. I do not have Lupas, but a few other Invisible Diseases. With the acceptance of ANY of these, the door opens a little more for all of us. Paula Abdul had the same oppurtunity and I don’t think she did as well with publicity and RSD/CRPS. I’m so proud of Lady GaGa that she did not let us down in the same way. If there is anything I can do to help, let me know.
    Your Friend,
    Anita

  • Dottie Balin

    Christine, you did it again ! Great letter, and I could feel the passion in your words. I also watched the interview and I was very glad that a celebrity spoke about Lupus. At least it got everyone talking. Very well written and thank you as always.

    Dottie 🙂

  • Melissa (aka DrSnit)

    Great letter! Love it! Wonderfully well written!!

    xo
    Melissa aka DrSnit!!

  • Jen Martin

    As lupus touches our lives…we find we have much more in common with each other than we know. Christine, you are an inspiration. To our Lady Gaga, she is an inspiration as well she never gives up just as yourself Christine. That is entitled to soooo many of us reading this very article . Keep strong. “We Can Do It” 🙂 xoxo

  • janet

    Very well written, of course. I watched a segment this morning on GMA about Lady Gaga’s interview on Lupus with Larry King. It was very good I thought.

  • Christine, I do believe that God works in mysterious ways. Your life changes with Lupus more than I think people realize. You surely have a gift of speaking and writing. Your letter was very to the point and speaks volumes of what those living with Lupus experience. Much thanks to you for what you do. I just watched the early show on CBS and they discussed Lady Gaga and explained what Lupus was and what some of the symptoms can be, etc.. After a two year search and “knowing something was not right”, with my own body,I have often prayed for more awareness to be brought to the forefront. God Bless.

  • Julie Culp

    Beautiful letter Christine, you do have a way with words.

  • I never thought much about what it would mean to someone to have a celebrity engage with the public about a medical condition like lupus, or anything else. Truth be known, I have occasionally suspected that celebrities jump on the medical condition/abuse bandwagon to get publicity. I didn’t see the Larry King show and I don’t follow Lady Gaga, so I take your word for it that Lady Gaga’s revelation was honest and sincere.

    I found your website off a Twitter post, intrigued by its name to read further. I’ve been searching for a topic to write about all week, and have been inspired by your blog. Thank you.

  • Kym Ryan

    Very nicely said Christine, i truely hope Lady Gaga takes this all in a postive light and brings some attention to Lupus (even if she does not have it herself) Lupus awareness is something that is so lacked, and Lupus is so often just pushed aside as, maybe not a big deal, or too confusing to deal with. But to all us with Lupus it is a HUGE deal, hopefully Miss gaga will take the steps to bring some much needed light to the very kept in the dark disease..

  • Samantha

    It was well spoken. With what a lot of us go through, we are not privy to getting help for reasons such as money, and well…the usual annoyances. I admire Michael J Fox, but I was unable to read into his books without getting frustrated at the fact you have to be of a certain status to get help; and yes, I am ashamed to admit that, because I know that it isn’t easy.
    What does make me hopeful, is the news slowly getting out there one disease at a time (sad it has to take that) and hopefully they can see the suffering. One of these days, hopefully some of us non- awesomely famous people can get our stories of the troubles and suffering which could easily be reduced with a bit of help. One thing at a time.
    Sorry, it is late and I am emotional, I will get to the point. Your letter…it was amazing. And the point of my tirade…I am glad you spoke up. 🙂 You are very well spoken, and well, keep at it!

  • Very nicely said Christine, and thank you for posting the interview, she DID handle the question beautifully.

    I wish more celebs with diseases like ours – whether its Lupus, Fibromyalgia, or CFS, would use their celebrity status to bring attention to these illnesses, as others have in the past.

    I secretly sing along to the songs too shhh!

  • Nicely said! And as you have said most celebrities DONT want to be associated in any way with a disease because it can impact their reputation or earning potential. I never wanted people like Michael J. Fox to have to deal with a chronic illness or Scott Hamilton with various conditions, including cancer, but I have such admiration for how they have tried to use it to create awareness, while also remaining true to the person they are and not letting the disease change their attitude about life.

    Love ya, sister!