My name is Cass, I am 33 years old and live in the UK. I am a pretty normal 33 year old for the most part, but there is one aspect of my life that I can say is anything but normal. I live with 7 different chronic illnesses, one of which is Systemic Lupus Erythemotosus (try saying that really fast 5 times). Up until I was 19, I was perfectly healthy. I had some normal childhood illnesses, mumps, chicken pox, those sort of things. I was pretty healthy. I was a swimmer and an art student. I had big dreams of being the next big artist. Then my life took a strange turn and almost overnight was completely different.
I won’t tell you the full story, we would be here all day. Let’s just say that I became very used to being ill; if you can ever get used to it. Over the next 10 years I suffered weight loss, joint swellings, unbearable mounts of fatigue, migraines, slurred speech, weird rashes and a really annoying feeling that something was very wrong. It took 10 years of being told it was all in my mind to finally find a doctor willing to listen to me. Within this time I suffered some major health crisis, so I guess they had no choice but to take me seriously.
Up until the time I was diagnosed I had never heard of Lupus, other than on the TV show “House”. I did not understand it, I did not know how it would impact my life and I was terrified. I remember when they told me I went into some sort of catatonic state, I stared at one spot on the window the entire time and although I had questions I couldn’t find any words. I realise now that my life completely changed that day. When you are in the midst of it you cannot see the impact. For me this was a pivotal day in my life. I walked out and I remember thinking, “you have two choices, you can give up and pretend it’s not happening. let it eat you away in silence; or I can get up, stand up and live” I chose the second option.
I have always been stubborn. Most of the time this wasn’t the best quality of mine. But in this case it actually gave me a reason to fight back. I was angry and frustrated that the life I saw before me, the life I had planned out, would change. This spurred me on to research as much about lupus as possible. I learnt that there are millions of us across the globe. I made it my mission to connect with others and over the years. I became part of a wonderful community of people, all fighting chronic illness, all warriors in their own ways. You see, before diagnosis I was a career driven person. I saw the house, the latest technology etc etc. I saw friends for drinks in fancy bars and enjoyed spending money on things I really didn’t need. Don’t get me wrong here, I was still the same person I am now, but I just didn’t see life clearly. For the first time, straight after diagnosis I could see my life clearly. I knew it would be hard but I knew I could do it.It has been hard. Because I was diagnosed so late I have never reached a point of remission. Lupus comes in waves of flare ups and remission. For me I have just been in a constant active disease phase. I have tried hundreds of medications to stop it, many chemotherapy based, and none so far have worked. I live in extreme pain. I do things at pain levels I wouldn’t have thought even existed. Plus I spend my days in a permanent state of exhaustion. Somewhere between zombie and a potato. BUT I AM ALIVE. I am here. I have a life and a purpose. Okay it may not be how I thought it would be, but it is real and mine. I can still enjoy doing things, such as crocheting, reading and meditation. I practice daily yoga breathing and gentle stretching as well as learning guided meditation. I live life finding the positives in every situation. It isn’t easy to do, especially on the really bad days. I make sure I do one thing every day for me. My makeup, paint my nails, sit and read or even just sleep. There is nothing wrong with looking after you. There is nothing wrong with saying you’ve had enough or screaming and crying. Just make sure you get up after and brush yourself off. The main thing I wanted to say here is that you are not alone. However much it feels like it, there is a community out there for you.