Over the past few weeks I’ve been thinking a lot about Lupus in a relationship, or more specifically, how Lupus affects a relationship. When I say relationship, I mean any kind of relationship: marital, significant other, friend, stranger… How do we as Lupus patients act toward these people? How do they act toward us? Is it any different?
When I started college, I felt brand new. Nobody knew who I was and certainly nobody knew about my medical history. I told one person, my best friend at the time and for a while, he was the only one who knew. Eventually, I told my other friends and everyone was supportive, though I don’t think they fully understood Lupus and how it was destroying my body. I transferred schools in January 2009, and joined a sorority that fall. I had a full year getting to know the wonderful women of Alpha Omicron Pi better and made friends that will last me a lifetime. I was more open to Lupus and how sick I was but I didn’t believe they comprehended what Lupus did. There were a few, of course, and then more realized once I had my kidney transplant in October 2010. I took off that semester, staying home to fully recover for the spring semester.
Upon return in January, I discovered 2 things:
- My closest friends got tested to be donors for me (Aw! You all know who you are and I am eternally grateful), so they understood the facts about transplants. They treated me gently and had patience during recovery.
- Those who weren’t as close didn’t know how to react. It seemed as if they weren’t sure whether to act like nothing happened, or to be completely guarded. Either way was fine, I knew how the position they were in with their confusion.
My dad always told me if I could count my friends on one hand I would be in good shape. The friends I could always count on and who would do anything for me. I laughed when I was younger, but now it makes sense. These friends I have are family.
I firmly believe that unless you have Lupus you will never understand. How could anybody else feel our joints sticking together or the flash-fevers? The overwhelming exhaustion is too difficult to explain. But how can we understand what those who love us feel?
Our family, friends and significant others make the greatest attempts to be sympathetic to our needs. Evan, my boyfriend (who happens to be a paramedic), can comprehend the symptoms. He can hold on my hand during a blood test, rub my back when it hurts and make me tea when I feel blue and that’s all I would ever need from him- just to know he’s there and supportive of me. My parents can hurt emotionally from going to countless doctor appointments. And you know, I can’t even begin to understand how painful that must be for them. Watching someone you love suffer. So who has it worse? Us, as the Lupus patient or the ones we love? Both. We all struggle with this disease. It affects all of us. We just all have to be loyal and caring to each other.
We are the support system.