I was recently asked what has changed the most regarding my Lupus diagnosis. I replied “everything” because in reality that is the exact truth. There’s not a part of my life that hasn’t been touched in one way or another by this disease. I take medicine daily, I don’t go in the sun, I avoid being out of the house too long or at all, I lean on others more than I ever have, I lack energy, I eat completely different foods, and on & on. The list is long and it gets a bit depressing to talk about. After thinking about the question I realized there was one key word. What has changed the most... and I immediately knew it was my relationships with others. Simply said, the ones that matter will be there and those that don’t won’t.
Ok, okay. It’s actually not that easy. There’s a lot of growing pains and heartache. There was for me anyway. I learned a ton about myself, the people I thought would be there, & the people that actually were. The thing is, nobody is really prepared to go through anything like this. The daily ups and many downs of a chronic illness. The constant cancelled plans because you can’t move without pain or the continuous need for help .The desperation for understanding with acceptance and unconditional love. It is a monumental type of thing to take on, you can’t half-ass your love for someone with this disease. That also goes hand in hand with the person experiencing Lupus not being able to put energy into something that will cause them hurt or stress.
Let’ just put this out there as clear as possible, Lupus and stress just don’t go… even more so Lupus and sh*tty people are a big o’ no no. Let me spell it out IT’S NOT WORTH IT. There are only so many hours in everyday. We (people with Lupus) sometimes (most of the time) only get a very little bit of time everyday to feel somewhat good. I will be damned if I am going to waste it on people who don’t value me or me not value them. What would be the point!? Spend your time with those you love and love them fiercely!
I was really surprised by the change of most of my relationships. There were two people that didn’t surprise me at all and I am so very thankful for them. There is one person that has been there for it all, the very worst of the sicknesses and aches. The person that will pick up the pieces when my brain just can’t. In all honesty, I only have a handful of people that continuously FOUGHT to be by my side. No matter how hard I tried to push them away. When I say a handful, I mean exactly five people.
I use to think you needed an army of people or the more that were in your corner the happier you would be. Although my circle has always been small, it’s teeny tiny now… maybe like half a circle. I started to recognize patterns in people and it zapped my energy. I felt completely drained after being around them. There were also the people that if I wasn’t able to offer some kind of value to their life then they didn’t need me. Like me, just being low energy and sick but still me was not enough. It was such a confusing time. Not only was I learning I have some serious health issues but I was also learning how to deal with the unexpected change in all my relationships.
There were some people that I firmly believed would always be by my side no matter what. That there was no way in heck we weren’t going to be an active part of each others lives. but somehow, someway they just weren’t there. It’s as though they vanished. Why? I don’t know. They say one thing. I see another. I still love them dearly but those relationships have to fall to the side. I realized I HAD to be selfish and if those relationships could not survive my health issues then maybe they weren’t as valuable as I thought.
So, What is the biggest change since Lupus has slowly taken over my life? The people I have in it. I am more aware who I spend my time with, who I let in. I have a clearer picture of the people that love me unconditionally and are okay with me being vulnerable. I know who I can lean on and trust.
It’s another one of the twisted weird gifts Lupus has given me. I’ll forever be grateful for each and every person that has been there for me through this. That love is something I can’t ever put into words. For them and for me I am going to keep fighting like the warrior I am.