1am had come and gone and thanks to some wonderful insomnia, I was still awake. Staring at the ceiling, journaling until my hand started cramping up and I couldn't think straight enough to finish a thought.
I was thinking about suffering.
In chronic illness, like in a lot of things, I think, there are a lot of misunderstandings. It leaves the patient (namely me, yesterday) feeling alone and frustrated. It feels like on top of actually feeling the physical pain, you have to defend it. Everyone seems to need a reason for why things are the way they are or why I'm feeling the way I am.
I'm tired of hearing everyone's opinions on how I should act or how I should treat my illness and my body. I'm tired of people in general acting like they have some sort of right to how I live my life.
And I feel like, in dealing with a chronic illness, people expect you to make yourself smaller. If you're having a flare, you have to have done something wrong. If you can't get out of bed in the morning or can't take a shower it's because you're not trying hard enough.
I think a lot of people expect patients with any kind of illness to be positive and happy all the time and that's really not true. And I feel like people are uncomfortable when they see that side that is real and honest and that really sucks sometimes.
"Stay in your little closet until you find a cure," They'll whisper, "Once you get a cure, then you can inspire people. But right now you're sick and unless you can pretend like that part of you doesn't exist then stay back."
I think, as a society, we're so quick to shrug off suffering. There's a quick fix for everything, even though it's not always that simple. One of the problems with this I see is that no one ever teaches you how to live with that pain or how to embrace who you are now.
Yeah, my life changed dramatically when I got sick. But that's not necessarily a bad thing. But I get treated like it is. I get shoved back into the corner, afraid to be myself because I'll be judged or pitied or whatever. I can't be real because that's wrong. I have to just sit there in my nice little closet and say magic words and believe I can get better and be positive all the time and then, once I get better, then I can come out.
I think more and more people are acting like suffering shouldn't be allowed. If you're sick, you take medicine and get better. If you're depressed, you take pills and make yourself happy again. As a society, I think we're uncomfortable with pain and suffering and anything that's different. There has to be something wrong with you and you have to fix it as soon as possible. And you better not inconvenience anyone with your pain. Basically sit down, shut up and smile.
I think this naturally brings me to a question of, "Do I want to be sick?" Well, obviously not. No human being in their right mind would choose agonizing pain and feeling misunderstood and being judged for something they can't control.
Do I believe I can get better? Yes. I totally believe if He wanted to, God could heal me.
Do I think it will happen in this lifetime? No, I don't. It's a possibility, but I don't believe it will happen, at least not in the way everyone expects it to.
But, here's the thing, and it's something I'm still learning too, there's nothing wrong with who I am right now. Being sick has taught me so many things and I've had so many wonderful opportunities and I'm proud of who I am. I don't ever want to make myself smaller or try to fit inside neat little boxes. This is who I am and I'm not going to stop being myself because it makes someone uncomfortable.
Being sick is a huge part of who I am. It impacts my daily life. And while, yes, it sucks, I wouldn't ever want to change it because it has made me who I am today. And I'm proud of that person.
I'm not looking for a quick fix. I'm not looking to make myself smaller and quieter and more socially acceptable. I don't want to hide those real honest parts of me and what I go through and just gloss over things and pretend everything is fine.
It's ok not to be fine. It's ok to be different. It's ok to fight and struggle and cry.
I am open to healing. I'm working every day on getting better and on feeling better. But right now, this is who I am. For the rest of my life, this will be who I am, regardless of whether or not I get a 'magic cure' or not. Every single day of my life I will fight and struggle and I'll have flares and be sick. It doesn't mean I did something wrong or that I could have prevented it. I can't live my whole life in the what if's.
I'm open to all the possibilities my future will hold. Maybe that does mean the doctors finding a cure for my diseases or maybe it means me having less flares and feeling better or maybe they won't find a cure and I'll spend the rest of my life walking this tight rope between feeling good and feeling like I got hit by a bus. And I'm ok with that.
I'm doing this my way. I'm doing this honest and real and I'm not stifling myself to make you comfortable. I'm going to shine, either come with me or get out of my way.