Hi! I'm Katie and I haven't been on this blog very much at all since being diagnosed with Lupus as I was angry and 16 and didn't want to associate myself with other people who had Lupus because I felt like that wasn't who I was.
As I've gotten older (and weller!) I'm 20 now and learning to embrace my lupus filled self and the stretch marks on my skin from all the body changes. I want to own my past and grow from everything I went through. From facing near kidney failure to the narrow escape of needing chemotherapy (and suddenly having to think about my potential fertility at 16!)
When I was mega poorly (hopefully you'll find out more about this as I've wrote a blog post for this forum about studying with Lupus which I've been told will be shared in the next couple of days!) Lupus consumed my whole life. How could it not? I was sick every morning and my lovely teenage body was swollen and covered in marks- and I also got acne yay. When I met people I almost wanted to explain to them why I was this shell of a person- and would instantly pull out the - I have lupus and recently I nearly could have died- card.
This didn't make me many friends.
And then when I got better I wanted to distance myself from the illness as much as possible. It doesn't define me and it's not who I am. And I kind of put it from my mind. Aside from having to take medication every day and still going for regular bloodtests ha....
Now I'm in a happy place. Lupus doesn't 'define' me but it's part of who I am and my story and heck it's very much going to be part of my future when I have to go to the hospital like ALL the time before I try have any babies. (So like yeah they could have deformed ears idk...)
What do you think? Does Lupus define you? Do you embrace it or try to get away from it? I imagine being on this forum you aren't trying to ignore it all together!
Since I embraced my illness I'm the disabilities rep at my college at university, and I've done a 5k run to raise money for Lupus UK. I want to do so much more. I don't want to be resentful. Lupus is physically part of my body. My own body being a bit confused. It's not a monster that needs to be beaten. It's something that needs to be nutured and cared for.
I know I've gotten a bit waffly towards the end but yeah woo.