It’s been too long. Finals week is coming up for me. I just walked out of my bio final and I’m kinda just praying I passed and I thought I would write this blog that’s been in my head all week. Now, you might not know that this month is lupus awareness month. (Also fibromyalgia and lyme month!) I don’t post a whole lot about my lupus. On this blog, I post a decent amount. But on most of my social media I just don’t. I don’t criticize people who do, it was just a personal choice I’ve made for now. But having lupus is a huge part of my life, and so with it being lupus awareness month, this also marks the 3 year anniversary of my diagnosis. In fact 3 years ago I made a Facebook status about it. It read “Please be praying for me as I go to the doctor. I’ve been feeling awful the past few weeks. On and off fevers, joint pain, and swelling. And I’ve been feeling very weak and experiencing fatigue. Please pray that it’s nothing serious.”
Poor me had no idea.
Anyhow. There’s a lot that I want people in my life to know about me and my sickness, so I wanted to share that today. This is by no means a reflection of all spoonies; in fact, most of the time I can’t relate to a lot of those chronic illness posts. So it’s really just me and how I feel. So here’s what I want the people in my life to know about my illness.
I’m not the person I used to be but sometimes I think that I am. I think that I can be as active as I used to be. I think that I can keep up with all my friends. Sometimes I can too. And when I’m feeling okay, I can forget that I have a chronic illness and push myself too hard. Some days my body can take it, and some days it can’t. I don’t need you to tell me I shouldn’t have done that. Trust me, my body feels the regret. I don’t need you to tell me what I can and can’t do or for you to hover over me and say “Faith, remember not to push yourself.” I got it. Okay? Trust me. It’s been 3 years. I’m 19. I have a brain. While yes, I will make stupid decisions. Sometimes you just have to let me make stupid decisions. I’m sick, but I’m also just a kid and I have to learn and grow and experience things on my own. Sometimes I will push myself and be sick the next day, but don’t try to force me out of stuff just to ease your conscious.
My body goes through changes and I’m self conscious about it, don’t be that guy and point it out to me. I know when I’ve put on weight. I know when my moonface is there. I know when I’m more or less active than I used to be. I get it. But I’m trying to learn to give my body a break, and it kills me when people tell me how I’m looking. So just accept it. Yeah, I’m not a model. I’m trying to get used to the fact that my body will looked different each day. Don’t point it out to me.
I’m a person with lupus but I’m also just a regular person. I go to the doctor a lot and get sick a lot and have medical issues going on. But trust me, I have a lot of other interesting things in my life. Sometimes I like talking about other things besides my latest health crisis. Now, that doesn’t mean I don’t want people to ask me how my health is doing, because I really appreciate it. I just want to talk about more than just that. I have goals, aspirations, and dreams. I’m in school. I run an online ministry. I write novels and do photography. I have emotions. Interests. (I just saw Civil War. I would much rather talk about Marvel movies than my upcoming surgery.) Ask me about different things too.
Please don’t tell me you can cure me. I don’t tell people this, but I struggle with feeling like being sick is my fault. That if I ate better I could fix it. Or if I exercised more and didn’t sit around so much. If I cut out processed foods and sugar I wold be okay. I’m working on being healthier, and there’s a lot of emotional crap that tangles into that, but I’d rather not go into it. Point is, please don’t tell me how I can get better. I’m glad that Cure All Thing helped your great aunt’s mom’s boyfriends cat groomer get better. But let my treatment be between me and my care team, alright?
Just because I’m sick doesn’t mean I don’t want you around. I’ve noticed that when I’m sick, people tend to leave me alone. But sitting in a room all by myself gets incredibly lonely. Sometimes I need to be by myself, but other times I crave company. So when I’m sick, just ask. “Hey, need someone to be with you?” I’ll be honest with you. I know, it’s really hard to be with someone who’s sick. It’s boring. I’m high maintenance. You feel bad for me. And I’m sorry for those things. But people always ask what they can do, and I think just being present is good. I like to listen when I’m sick. Just because I close my eyes doesn’t mean I’m not paying attention to you. I shut my eyes because it’s easier to not feel so sick that way. But I listen and imagine the places you describe. Sometimes I just need someone’s company. Even if we sit in silence and watch Netflix, I feel a little less alone.
You’re allowed to make jokes. Seriously. I like laughing. You can call me ITP after my blood disorder or Spoonie. You can say the big C-A-N-C-E-R word. Really. Y’all can chill out.
I’m not strong for a sick kid, I’m just strong. I work my butt off in the weight room at school. I ride my bike. I can do 10 pushups. I squat 55lbs. Maybe those things aren’t impressive to you, but they’re impressive to me. 3 years ago I couldn’t walk. Now I can hold a wall squat for over 2 minutes. I’m strong as frick. I’m not lupus’ victim. I’m crushing it right now. And I know a lot of people with chronic illness say that but it’s true. I go back and forth between “I want to be treated like everyone else. Give me a fair fight.” and “No, I literally have a debilitating illness that makes things 10x harder for me than it is for you.” So be aware of my limitations I guess, but give me room first. Mara Jade said in an EU book, “As long as I’m fighting, I’m not dying. And I’m not done fighting just yet.” Not to mention, “I’m a fighter. I’ve always been a fighter. The few times I’ve been at leisure I’ve been miserable. I want challenges. I crave them.”
So don’t take it easy on me because I’m sick. But be mindful. And the last thing I want you all to know…
I’m not suffering. Need me to say it again? I’m not suffering. I’ve been through things that have been worse than being sick. I’ve had depression. Anxiety. Crippling fear. I suffered at their hands. Maybe that doesn’t make sense, but there are worse things than occasional physical pain or discomfort. Compared to most people with lupus, my life is a walk in the park. I really mean that. Go look it up. There are people that are really suffering. I’m not one of them. I have my moments, but I’m okay. I’m sure that’ll change. I’m sure I’ll suffer more, like I did in the hospital last year. But as of right now, as of today, I’m not suffering. I don’t need pity. I need prayer and support and love and people to laugh with me and not make the fact that I’m sick all weird.