When You Look at Me

The web of our life is of a mingled yarn, good and ill together.

William Shakespeare

I’m very open about being in therapy. Recently, therapy has been really hard and I’ve been forced to look deep down inside of myself to find the answers that I’m looking for. But that’s the hard thing. Most of the time, the answers you want and the answers you look for are not the answers that you find. That can be hard to realize and accept. I’m quick to blame the people around me for how I’m feeling in that moment. It’s something that I struggle with a lot. I think that it comes from people not really seeing what goes on in my day-to-day life when it comes to being chronically ill. It’s something that I have talked about before, because it’s something that makes me really angry. Is the anger warranted? Maybe not. Or maybe it is if you look at it from my side. I struggle everyday with my symptoms. Some days the pain is mild. Some days the fatigue is mild. Some days the medication side effects are mild. But, some days all of those things are severe. Some days I don’t have the energy or the strength to get myself out of bed and down the stairs. Sometimes I go days without showering because I just don’t have the energy. The point is, I wake up every morning not knowing what the day is going to bring me. Every single day is different. I wish that there was a handbook to living with chronic illness. Somebody to just give me all of the easy answers. But there aren’t any easy answers because everyone’s journey is different. I look for validation in everything that I do, which has caused me a lot of stress and heartbreak. I don’t think that it’s wrong to want to feel validated, I think that it’s normal. It’s how you go about it, and how you react to it that means everything in the end. I feel like I’ve driven myself crazy at some points in the hope to feel even a little bit validated. But you don’t always get what you want, and that’s okay. I compare myself a lot to other people fighting chronic illness or mental illness. A lot of times I tell myself that I don’t deserve to feel the way that I feel because other people have it worse than me. It’s an ugly, intrusive and unhealthy thought, and I know that. I just have to keep reminding myself that for me, in my life right now, everything that has happened to me has been “the worst case.” You never expect to have your life turned upside down overnight, no matter who you are. Honestly, drowning in 4 feet is the same as drowning in 25 feet, you still drown in the end. So just know that the feelings you have, deserve to be validated. It’s okay to be selfish sometimes. If you think that you’re in the worst possible situation in your current life, feel those feelings. We need to stop making people feel guilty for having the feelings that they have. We’re all doing the best that we can. I think that all of my anger and frustration that I deal with stems from what people see when they look at me, or rather, what they don’t see. I’m sure you all have pictures in your head when you think about me. And I bet none of them really go beneath the surface. And that’s not your fault, it’s a normal human reaction. But it doesn’t hurt any less, it doesn’t cause any less frustration or anger. I’m good at covering up what really goes on behind what you see when you look at me. I think it’s just become some sort of survival technique, just another way to coast through life on autopilot because it’s just easier. But I’ve come to realize that by doing that, I’m hurting myself even more. There’s layers upon layers of trauma, guilt, grief and pain beneath the surface. Really, really hard things. Things that no normal 21 year old woman should ever have to deal with. Hard decisions have been made, along with impossible choices and everything in between. When you look at me, you don’t see the one hospital trip that changed everything. It’s so much pain and heartache wrapped into 24 hours. It’s the fact that even though I was almost 20, they put me in the pediatric emergency room because I didn’t want to be without my mom. It’s all the tests that they ran, the on-call rheumatologist not really believing my pain, making it that much harder for everyone else to believe it too. It’s my mom laying in the bed with me trying to calm me down, and telling me how sorry she was that she couldn’t help me. It’s my grandma eventually coming to the hospital also to be there for the both of us. It’s my sister cleaning my entire room so it would be nice when I came home. It’s my brother terrified because he thought he was going to have to give me a kidney. It’s being released without any answers or solutions. It’s me crying every single night for the next 3 weeks because I was so beyond done with everything. It’s eventually realizing months later that this hospital trip was the turning point for my treatment. If I didn’t end up going to the hospital that day, my doctor probably would have waited longer to switch my immunosuppressant. So, in the end I guess everything worked out. All of that is what you have no clue about. There’s one other thing that I’ve gone through that people outside of my family have no idea about. It’s something that I still think about a lot. When my doctors and I first started talking about switching my immunosuppressant to Methotrexate (the result of that hospital trip), I was terrified about one thing. My ability to have children in the future. Methotrexate is a chemo drug, and at very high doses it can cause infertility. I stressed out about this for weeks. All I’ve ever wanted to be in life is a mom. And for the those few weeks, I was faced with the thought of that not happening, At this point, I didn’t know if the dose I was going to be on, was high enough to effect having kids. If it was going to, there was one question that everyone kept asking me, would I freeze my eggs? What 20 year old should ever be faced with that kind of decision? How is that fair? Those are thoughts that ran through my head 24/7 for those couple of weeks. When I finally saw my doctor again, the first words out of my mouth were if my dose of Methotrexate would hurt my fertility. The answer was no, it would not effect my fertility, and I would not have to freeze my eggs. But I would have done it in a heartbeat. Because that’s the thing, the fact that I even had to answer that question, or be faced with that kind of decision was frustrating. But coming up with an answer was never hard. You do what you have to do for the things that you want. I don’t like that I have to make these kinds of decisions so young, but they’re decisions that I’ve been forced to make, because I don’t have a choice. So, while you might see a normal looking 21 year old on the outside, everything that goes on inside is so much deeper and harder than you could ever imagine. While I’m good at pretending I’m not, in the end I’m a young woman with a bunch of autoimmune diseases and mental illness. I’m a person scared of the monsters in my closet, and definitely the monsters in my head. I’m not hiding or covering up the hard times that I go through anymore because it isn’t healthy for me, and I deserve to be listened to and heard. Now, when you look at me, think about everything I have overcome in the last 3 years. I hope that by sharing my story, it gives you hope that you can overcome anything hard or scary that you are currently going through. Because if I can, you can too. The really honest truth is that no matter who you are, we all have moments that define us without us ever realizing it in that moment. I think that we all have to be a little bit better at learning and understanding what those moments are for other people. Because the truth is, we all have things buried and hidden underneath the surface. And maybe, we just want other people to see them too. I don’t think that’s too much to ask. It never occurred to me that one day I would wake up sick and never get better. I guess that’s my defining moment. And it’s important enough to be talked about, and I hope that people will understand it, and why it makes me who I am today. The last two posts I’ve written have ended with lines from Us Against You by Frederick Backman, my favorite book. So, I feel like I should end this post with a line too, because honestly I could do a whole separate blog post with all of my favorite quotes from the book, because it’s just that good. Here’s another one of my favorites, and I think it goes with theme of this post too. “It’s hard to care about people. Exhausting, in fact, because empathy is a complicated thing. It requires us to accept that everyone else’s lives are also going on the whole time. We have no pause button for when everything gets too much for us to deal with, but then neither does anyone else.”

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