In 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