We All Have Lupus. – My Speech from The Lupus Gala Brunch

 

purple lupus ribbonIn Honor of Lupus Awareness Month.

The following speech was given by Christine Miserandino – Donato at the Lupus Gala Brunch given by the Lupus Alliance of Long Island/ Queens. It is titled “We All Have Lupus”


Thank you to the Lupus Alliance and the Board of Directors for this honor. I speak for myself and my family, when I say that volunteering for the Alliance has given more back to us, than we have given. It means so much to help lupus patients and their families.
You might be wondering why my whole family is being honored. I am the one who has lupus! It is easy to think that I am the one who is in pain, taking medicine, or scared about her health or her future….. But before I can explain why this honor is so very special to all of us, I need to start at the beginning.
I can remember it like it was yesterday. I went all the way to the Mayo Clinic in Minnesota with hope and excitement. You would think I would be scared, but I was going there determined to prove all the doctors I had seen were wrong. I had the flu…. or growing pains. After a long week of painful tests and scary procedures, the specialists did prove all my doctors wrong. It wasn’t any of the 15 or so confusing diagnosis that other doctors gave –
it was lupus. I remember hearing those words, not even really knowing what lupus was, but somehow knowing it wasn’t good. My mother held my hand, and we both left the doctors office in shock. We barely spoke, and for those of you who know my mom and me, that is very unusual. We went back to the hotel and as I went into the shower, my mother called my dad to give him the news. She didn’t know that I was listening, but I heard her say the words
that I would soon bug her about for years to come. She said in a cracking and teary voice “We have Lupus.”
Fast forward a few years to a feisty, bold teenager sitting in yet another hospital. The rheumatologist came in and asked me what brought me there. Before I could get my answer out, my mother answered… “We have Lupus.” After the doctor left, my mom and I had a silly fight because I wanted to know when “she got lupus”. Was it contagious? I said I was the one laying there, not her. As normal teenagers do, I was trying to claim independence, and “become an adult”. If I was stuck with this disease, at least I could say it was “mine”. My mother didn’t fight, she knew I was just upset, but she said quite softly and with confidence… “You will understand when you are a mother.”
This brings us to this past April, almost exactly a year ago today. I was in the hospital for over two weeks. I was almost six months pregnant and I trying desperately to keep my baby girl healthy, and inside my belly for a little bit longer. I found myself praying for this baby to be the one good thing in my life that lupus didn’t take away or ruin. I was quite the popular attraction, as lines of doctors, students, and nurses all wanted to see the “pregnant lupus patient”. My husband held my hand and kept telling me everything would be okay. As the neonatal specialist came in to check on my baby, he asked me what was wrong, what brought me into the hospital. Without skipping a beat, I put my hand on my stomach and quickly answered, “We have lupus”. I guess that is the moment I became a mom, because now I can finally say that I understand. Lupus effects everyone that loves you.
When my friends still support me and still cherish our friendship, even when I am too tired to go out and party, when I cancel plans, or when I am in too much pain to answer the phone …. They have lupus too.
When my new in laws, come to help take care of our baby, and help us around the house. When they fill our fridge with food, or run errands, or when they worry… I know they love me and they have lupus too.
When my extended family and friends send emails or cards of encouragement. When they call on a rainy day just to check that I am ok, or pass along an article about a new lupus treatment… they have lupus too.
All these years that my family has loved and supported me, they have been affected by lupus. When I wanted to be the team that raised the most money for the lupus walk, my family formed a team and stomped the pavement for
donations. I decided I wanted to help people with lupus. I was passionate about helping others who are living with lupus lead better lives. My brother bought me my website- butyoudontlooksick.com to encourage me to write and
reach out to others with lupus. My father comes every morning to take care of me, and my baby girl Olivia. My family supports anything I want to do and they make it their passion too. My family has lupus too.
Lastly, when my best friend, my husband, took those marriage vows, I guess he really listened when we said “in sickness and in health;” because he is a shining example of a caregiver. He loves me not despite or because of my
lupus…. but just because he does. He reminds me every day of the person I am. He takes care of me better than any doctor ever could, and sometimes I think he knows more. In the end- I guess he has lupus too.
I would like to use this moment to thank everyone who has, and continues to support me in my life with lupus. Although the Lupus Alliance has chosen to honor me, I believe this honor is really for everyone loving someone with
lupus. Yes, this has been my battle, my war with lupus… but luckily I have had an army to fight with me. We all have had lupus.
Please join me in a round of applause to thank and acknowledge my family and friends.
Thank you.
written by Christine Miserandino, © 2008 butyoudontlooksick.com

©2022butyoudontlooksick.com
  • Michele Gaston

    Christine,

    You never fail to continually encourage and inspire!

  • Christie

    I, too, am sitting here with tears running down my face. If I actually tallied up all that lupus has taken away or destroyed I think it would do me in. So I don’t go there. I am directing a play for the community theatre here and one of my cast members asked me why I was in a wheelchair and I told her, I have lupus.. as the beginning to the explanation spiel I usually give. Thanks to you, I didn’t have to. Her daughter has Lupus and lives far from her in a more pain free enviroment (less rain ‘n humidity). She and I bonded instantly. I mentioned butyoudon’tlooksick.com and right after she asked if I followed the spoon theory and I exploded with excitement because here was someone who knew, who I didn’t have to explain to. Since she cannot be near her daughter, she has kindly offered any help to me that I might need. Small world.

  • Julie Culp

    WOW! Your speech brought tears to my eyes. Wonderfully said .. thank you for being there to speak out for all of us with Lupus and thank you for all your hard work. You are fantastic!
    Hugs, Julie

  • Missy Oakley aka Irish Idiot

    Your speech was great. Sometimes we forget that our families are along for this “spoonie” ride we are on. You are truly blessed with the ability to say what so many are unable to put to words.

  • Dottie Balin

    Christine, you are truly an inspiration to all of us with “Lupus”. Thank you for all of your hard work. You are very blessed with your family and friends who care. Keep up the good work, we need you to be our advocate. Congratulations to you and your family.
    Dottie

  • Pam

    Just beautiful!

  • Perneita

    Yes, please cherish your family and friends…they are the exception to the rule for people with chronic illnesses. Unfortunately, I am in the other 99% of people who are left to figure out how to live with Lupus on my own. Nobody wants to take the time to be educated or ‘bothered’ by knowing what it means for us or to make the sacrifices it takes to live alongside us on the unchartered journey. I am working on forgiveness to those that abandoned and betrayed me while I was at my worst. But, every day I wake up and choose life….for myself! I even learned to “like” me! Good for you and congrats on the award!

  • Faye

    This is such a beautiful and understanding expression of how our invisible illnesses trully do effect us all.
    So as I sit here with tears running down my cheeks, I want to take the time to thank you and your family. You have done so much not only for patients that have lupus, but all of us who have invisible dieaseses. Help in understanding and standing up for ourselves and getting the help we do need. I have other illnesses and your site has been a godsend for me. Though, *sigh* we may be adding that to the list, as my doctor now suspects Lupus as well.
    Thank you again to you and your family. You trully have been a shining light where there was none before.
    Faye

  • Pam

    This is perfect! I’m one of the lucky ones to have family support also.
    When I first started a support group we had a lady of mexican heritage who’s husband didn’t understand at all. Hopefully by now he does.
    I have a way of putting Lupus in it’s place. It’s not just Lupus it’s stupid lupus. That way I control the disease, it doesn’t control me.
    Thanks for your help,
    Pam

  • Andrea and Julie

    Dear Christine,
    Sitting here with tears rolling down my cheeks. Julie read this first and was so touched by it that she kept at me till I got on the computer. What a wonderful tribute to all your family, friends, husband and you. It is because of who you are and the love in their hearts that such a large community has formed. Congratulations on the honor given to you and your family.
    love, Andrea and Julie

  • Yes… what a beautiful sentiment. I just recently spent five days in the hospital myself for problems associated with my lupus. I get it. It DOES affect everyone.
    Keep going strong!
    Love and stuff,
    Michy

  • Diane

    *teary*
    I’m currently undiagnosed but we have something like Lupus.
    I have to share this with all those in my life who have Lupus now too.
    Thank you for continuing to help us understand.

  • Lilli

    Christine, What a fabulous speech! You made me misty-eyed and are a shining example of what many of us with chronic conditions like Lupus and FM/CFS (I am the latter) hope to achieve. I will be linking to your article in my personal LJ, if you don’t mind.

  • Jennye

    CHRISTINE, I HAVE TO TELL YOU THAT YOU HAVE BEEN A HUGE INSPIRATION FOR ME. I HAVE FM AND ALL THE GOODIES THAT GO W/ THAT. I STARTED A SUPPORT GROUP FOR FM AND RELATED ILLNESSES AND HAS DONE ME A WORLD OF GOOD!!!YOUR SPOON THEROY HAS BEEN BY FAR THE BEST TOOL FOR ME. IT EXPLAINS EVERYTHING ALL TOO WELL. I TELL EVERYONE ABOUT IT. YOU ARE GREAT AND KEEP IT UP. LOVE JENNYE HANNA

  • Christine! This made me cry! What an amazing speech! You ARE going to change the world. oxox Sorry I couldn’t be there! So proud of you!

  • Nancy

    Dear Christine,
    I had to take the time to write you a little note about the Lupus Gala earlier today. Although I have attended many of these events in the past, today was your shining day. I have watched you grow from a young adult into a beautiful woman.
    Your speach at the brunch was superb. I think it was better than your “spoon theory”. You touched the lives of everyone in the room! I hope others were as moved as I was. You were able to explain to everyone that we truly do touch each other’s lives and cannot exist without each other.
    Love, Nance
    P.S. I didn’t know where else to write this note for your website readers to see it.