sitting in your grief and defeat.

It’s easy to speak from the other side of struggle, but it’s really tough to speak from the middle of it.

Being alone in a moment of struggle and feeling all of your emotions can get really heavy, all you can do sometimes is sit in your emotions, soak them in, and bathe in your vulnerability.

Some people may feel that I talk about my disease a lot, and I do. I don’t do it for the spotlight, or to be pitied, I don’t want special treatment. The truth is, as much as I’m trying to educate you, I’m trying to come to terms with my disease. Sometimes I think I’m really trying to convince myself that I have it, because it doesn’t seem real. I think I’ve faked myself into thinking I’m semi healthy, but I’m not. I go to work (most days), I coach volleyball (because it gives me something to get out of bed for), I make efforts to see my friends and be there for them when they need me, I go to dinners and drinks, I go on dates and try to trick myself into thinking I’m healthy, because what I really need to be doing is resting. But I can’t let my life pass me by, so I push through the pain. I sit on the floor with my niece and play with her, because who knows how much longer I have the physical ability to do that.

Let me tell you a little secret: I’m living a double life. Those of us who are chronically ill unfortunately all share this secret, and we have one skill we have perfected to a ‘T’: we never fake being ill—we’re just all masters at faking being well, and that can be confusing.

“Society often either expects you to have an acute illness you can beat, or a disease that can kill you.”

Photo Credit: Shannon Queen

Society often either expects you to have an acute illness you can beat, or a disease that can kill you. What do you say to someone who is very much alive, but will never get better? I understand you don’t know what to say to me, that’s okay. I don’t expect you to fix my pain, but if I’m talking to you about it, it means I trust you. I trust you enough to share with you my most vulnerable state. My pain. Sometimes I just need you to sit with me and listen. Or ask me how I’m doing and listen. Tell me you’re here, because I’ve never been lonelier than I have been fighting this disease.

I speak about my illness because no one talks about what it’s like to spend your life sick.

Let that sink in.

Imagine having the flu everyday of your life, depleting your energy, making your joints ache every. single. day.

That’s heavy. Think about the restrictions you have when you’re sick, the things you can’t do when you feel like you have the flu? What do you want most? Lay in bed? Rest? Binge watch your favorite show on Netflix? That’s exactly what you should be doing, letting your body rest and recover so your immune system can go to battle against whatever has invaded your system. But what if the invader isn’t foreign, what if it turns out this is a lifelong civil war your body is waging? Are you going to spend every day in bed watching Netflix resting? No, you’re going to get pretty sick of it after a couple days and go try to live your life and push through the aches and pains.

I’ve spent a lot of time in the past month sitting in my grief— really soaking it in. I’ve been living this way for almost 14 years and it’s still hard. It’s hard to come to terms with the fact that there is no cure. I’m on this roller coaster ride and I can’t get off. I’m strapped in.

It honestly never occurred to me that I’d go to bed sick one night and wake up ill for the rest of my life.

I’ve lost a lot because of this disease. There are choices I’ve had to make about my life because of my disease, and it’s beyond frustrating. If I was healthy I never would have had to make compromises or sacrifices when it came to my future. The past couple of weeks I’ve been riding a wave of emotions and spending a lot of time in the different stages of grief. I’ve been frustrated, sad, guilty, angry, defeated and terrified.

I know I’m not going to come to terms with my disease today, or tomorrow, but the more I talk about it, the more I am vulnerable with my support system, the more I sit in these feelings and grieve the life I thought I would have, and the sacrifices I’ve had to make for my disease, I’m a step closer to acceptance, to strength, to clarity. But I need to feel the guilt when I call in sick to work, I need to feel the anger when an ER doctor doesn’t believe my pain, I need to feel the defeat when my doctor tells me I’m running out of medications and I need to feel the terror when I realize I’m 33 and am running out of options.

It’s a lot.

“It honestly never occurred to me that I’d go to bed sick one night and wake up ill for the rest of my life.”

Photo Credit Shannon Queen

Most days I’m okay, but recently I haven’t been, and that’s ok. It’s hard to tell the people I love and that care about me that I can’t talk about it, that I need some time and space to just sit in my grief. I know it’s probably hard to watch, but sometimes I need to cry uncontrollably and move through this range of emotions I’m feeling so I can move on from it. I need to cry in the shower and under my covers and hide from the world for a couple days because this isn’t an illness that will magically go away if I eat a certain diet, and my medication won’t cure me. It’s crazy to say that out loud. Some days I’m so exhausted from fighting my disease, that I just can’t imagine doing this for the rest of my life and yet the reality of it is, I will have to. I can be upset and not be having a pity party.

I feel like there is an unspoken weight on chronically ill people’s shoulders like we have to be a beacon of hope at all times. That I have to be speaking in constant inspirational quotes to prove how tough I am. Well sorry to break it to you, I’m not always that tough, I’m human. I break, and I cry. And It’s ok to not freaking be okay. I don’t need to be positive about my disease all of the time, that isn’t healthy. I need time to process.

In the end, I’m going to be okay. I know that. With this disease comes a lot of emotions that I’m always coming to terms with. But I have to go through this grief to come out stronger. I’m going to continue to get up every day and push through. Some days I might be pushing through from under my covers, but I’m still fighting. I won’t ever stop, but I have to take care of myself mentally as well, and if that means taking a couple mental health days to work through some emotional pain, then I’m here for it.