Sunday October 17th is the annual Lupus Walk fundraiser for the Lupus Alliance in my local area. I am a person living with Lupus. My family and I pride ourselves on being one of the top fundraising teams every year. We make phone calls or send email messages to family, friends and co-workers. We even try to “beat” our previous fundraising goals each year.

I feel extremely loved and supported by the people who come out of nowhere to either walk or to donate every year. There are some who I am very close with, but there are others that I see only on occasion that continue to send a check every year with their well wishes. Either way, I am so grateful for those who support me in my struggles with Lupus, my passion to raise awareness, and my fundraising efforts.
This year, when asking for donations, I noticed some people were less enthusiastic than in years past. I have noticed some family members, who have always donated every year, who didn’t this year. I have noticed some friends, who have joined our fundraising efforts in the past, are not participating in the annual walk for the first time in ten years. I have other family members who have shown no interest at all.
At first, I blamed the economy. Nearly everyone is struggling financially right now and many people cut back on charitable contributions when times are tough. I understand that, and have had to make some difficult financial decisions myself this year. That being said, I realized there are also other reasons for the general lack of enthusiasm. To some, raising money for the Lupus walk isn’t “new and exciting” anymore – others have just forgotten altogether, because they are not affected by Lupus on a daily basis. The thing about Lupus is that while you may not “see” it, it’s still there. It may go into remission, but it can not be cured. The more others forget, the more I feel the need to re-energize my efforts.
Recently, I had someone I considered to be close to me actually ask “Oh wait, do you still do that Lupus walk?”
I responded simply, “Yes, I still have Lupus.”
I have lived with Lupus for over 17 years. I have learned to deal with it, but that certainly doesn’t make me any less sick. I may choose not talk about my pain and exhaustion, but it isn’t something I can ignore either. I worry every day about my future as well as my husband, daughter, and family. I have learned to make better decisions about how to use my time and energy, and to keep some in reserve when I feel a flare coming on, but. I still have Lupus.
I take up to sixteen pills a day to manage my disease. Each time I reach for a glass of water to wash them down, I’m reminded that while I depend on this medicine to manage Lupus, I must also be prepared to deal with unsettling side effects. I chose to wear a wig when I suddenly and unexpectedly lost my hair. I use concealer to cover butterfly shaped rashes on my face, and use blush to make myself look less pale, but I still have Lupus.
I have a wonderful husband who understands that sometimes it’s best to have “dates” at home, watching movies together when I am too tired to go out. I have great friends who forgive me when I can’t return their call, or do not remember plans due to my Lupus related “brain fog”. I have a loving family that I can lean on when I need them, but I still have Lupus.
I will find the strength to walk three miles around the park. I’m sure I will pay for it for at least a week after the walk. It is painful and exhausting, but it is important for me to lead my team. It is important to remember that while I am very sick, I am able to walk, and there are others with Lupus who cannot. I walk for them. I walk because I couldn’t walk last year.  I walk every year, not because it is a tradition or obligation, but because we all need to do our part. We all need to fight for a cure.
Oh, and I walk because Yes, I still have Lupus.
Written by Christine Miserandino   *This article was originally written in 2008, but still is SO true today that I felt the need to reprint it.