May is Lupus Awareness Month, and walks and awareness campaigns are well underway. I am taking over the Instagram for The Lupus Foundation of Northern California, and I’m excited about it! It made me wonder about this month’s festivities. Last year I did my very first walk since my diagnosis. I say I “walk,” but I was pushed in a wheelchair. Still, I was excited to take part.
Here is the question: Is this a celebration?
I don’t know what to say as I smile about the opportunity to share more awareness, pray for a cure and hope the research dollars that are raised will bring us steps closer to finding a way to eradicate this disease. This year, I am abroad and I am feeling quite left out as there are no “celebrations or walks” to attend. There is no camaraderie of talking with others who can relate to what I am feeling on a consistent basis.
The memories I have from last year allowed me to bond with people who could feel my pain. Then there were the families who came, and shared wonderful memories of loved ones gone on to collect their butterfly wings as a result of lupus. Allowing them to speak to those of us who are battling seemed to give comfort.
So, again I ask, is this a celebratory month?
I am conflicted with the sadness I feel at having such a painful disease, and know that remission would be my only hope for feeling how I did pre-diagnosis. I don’t know what the statistics are for that, but I can tell you I’m chasing it like it stole my mother’s purse. I am shouting to the top of my lungs about eating properly, doing our best to take care of our organs by being careful of what over-the-counter drugs we take, and just being grateful and stress free. I want to celebrate life no matter what.
I think I have concluded this month is about a celebration. It’s a celebration that we are not hiding because we are judged by those who don’t understand what we go through. It’s a celebration that we are walking, running and rolling (wheelchairs out folks!) to bring awareness and raise dollars for research.
It’s a celebration for those lost loved ones to have others share their memories, making it so they live on forever. It’s a celebration for those who have no support, but find it in a compassionate smile from another warrior who shares the illness that also has flipped their lives and who also may not have support. New “family” is made at these events and, while what we go through sucks in a very, VERY major way, what we gain through coming together helps us get through.
So, to answer my own question, in a sense, yes, this is a month worthy of celebrating. The men and women who fight this disease should be celebrated; the things our bodies go through is pretty rough. This month also brings out the loved ones, friends and co-workers who support us. They often are overlooked, but we see you! We know you are there and when you come out to walk with us, push us and donate, we love you even more. So, let’s “celebrate” lupus awareness month.
Put on your purple and let’s shout out together so we can find a cause and a cure.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.