Infusion Porn

Posted on November 5, 2013

The other day I was searching for the term ‘IVIg’ on Tumblr. I wanted to learn more about others who have experienced this treatment. IVIg is so infrequently prescribed that most people have never heard about it. So it’s often nice to find online support. As has been my experience, I did not find any thoughtful discourse on the treatment, efficacy, and wonders of IVIg. What I found instead is what I will call ‘Infusion-Porn’. Take a moment and search IVIg on Tumblr and you will see what I mean. There is photo after photo of bloodied, taped down, needle stuck arms labelled ‘IVIg’. IVIg administration is slow and lengthy, so I understand that this image could be considered the action shot, the selfie without a face, a curiosity even. My experience with IVIg feels very different than these photos. To me, IVIg is a caretaker, warm and loving. A supplement, nourishing my body, breeding new life. An infusion shot sells my experience of IVIg short, much in the same way food porn can’t replicate the aromas and warmth of a meal. 
 
My first experience with ‘Infusion Porn’ happened a few years ago when I found some hospital photos of a stranger named Janelle. Janelle was a Catfish who had crept into the lives of a few friends. She ‘died’ years before I had ever known she existed. She was dead… until she un-died. You see, Janelle had faked her death. We re-discovered her when she was in the process of dying with her newest group of friends. Finding her online was truly shocking. The first time I ever saw an image of her, she had taken a selfie in a hospital. She was covered with IVs and breathing tubes, apparently struggling to live. The photo is long gone, but it was ominous. We still haven’t figured out how she managed to take such a photo, especially knowing what we know now… that she never had cancer (just like she was never friends with the Australian pop star and never had ties to the Australian mob). 
 
That being said, Janelle was suffering. Maybe not physically, but she was suffering. And she was reaching out. So she took that photo. And while her suffering was entirely different than the suffering conveyed in those photos, it still raises the same set of questions for me. Mainly, what does an infusion selfie say of those who are suffering.
 
I recently read about a small town in Oregon where a vigilante was leading a crusade to bust those on disability who didn’t look disabled. 
 
Many autoimmune patients don’t look disabled, so maybe a graphic infusion photo is a way to express what it is that we feel on the inside that can’t be seen on the outside.
 
I have shown my suffering in many graphic ways. I have fought, lost tons of weight, and pushed my loved ones away. But I never have been able to relate the image of an IV in my arm to what it is that I feel on infusion days. IVIg is a life saver. It is a treatment with little to no side effects. It can completely erase the damage done by many autoimmune disorders. My experience with IVIg has not been as clear cut as I had hoped. It helps, but it hasn’t erased the symptoms of my CIDP. 
 
That being said, I will continue to feel gratitude for this strange treatment. And don’t get me wrong. IVIg is extraordinarily strange. It’s a blood product, made from the plasma of at least 10,000 donors. It is not known how or why IVIg works. It just works. I’ve read about potential future IVIg shortages… the pharmaceutical companies who sell this product are supposedly bloodthirsty (real life vampires!). It’s a clear substance, its consistency sleeker than water. I love watching it bubble during infusions. The bubbles rise to the top, perfectly formed balls of air. I’ve always thought that the IVIg bottle looks like an Absolut bottle turned upside down. If you’ve seen True Blood, the vampire bar ‘Fangtasia’ comes to mind.
 
I have a secret hope in writing about IVIg. I want someone else to write about it too. That being said, I will post my own version of Infusion Porn. I love this photo of myself. It was taken after months of IVIg. While my symptoms came and went during this time, I never had a massive flare up. I learned a lot during these months and went through a wonderful healing process. There are many things I credit for the joy I felt on this particular day, and IVIg is one of them. 
 

Be the first to leave a comment

Leave a Reply

Your email address will not be published. Required fields are marked *