By Jasmine Miller
It’s hard.
That’s what they don’t tell you when you get diagnosed. They tell you things like “It’s manageable.” Of course, that is what they’re supposed to do. They’re doctors. But nobody ever tells you that it’s hard. Not the doctors, not your family, not your friends. Nobody says it. Nobody wants to be the one to say it. And that’s sad. They want you to be strong; they want you to think that it’s not too bad. Because maybe if you believe it, they’ll believe it, too.
It’s lonely.
Nobody warns you how lonely it gets. Because, at first, everyone is supportive. Everyone. You post about the bad news, and everyone is swooping in, saying that they’ll be there for you, that you gotta look on the bright side, that they are thinking about you or praying for you. But once the novelty has worn off for them, you become someone that gets put on a shelf. Because you’re sick, you can’t go out as much. After you say no so many times, people stop inviting you. You have to cancel hangouts and meet-ups because you are too sick to go out. But when you invite people over for a night in, they don’t want to do that. You’re the one who is sick and trapped, not them. They want to be young, and be out there living life while they are still young enough to live it. So, your phone stops ringing, and people stop replying to you. And when you do get invited, you feel the need to thank the person who invited you. You feel like you gotta thank them for THINKING of you. You’re thanking them for making you feel like the space you take up in this world matters. That’s an ugly truth. But nobody wants to be the one to say it.
It’s halting.
Nobody wants you to know how this will hold you back. Being sick means that every damn day is a struggle. Being sick means you need to “push through it” all the time. And it’s common to be told “just push through it” or “just try a little harder” when others don’t see the everyday struggle. They don’t see how taxing it can be to take a shower, to brush your teeth, to get dressed. Nobody mentions how hard it is to admit that you can’t do things you loved to do. Nobody warns you that there are now foods you should avoid that you loved to eat. Nobody warns you about the inevitable day when you wake up and you can’t find a reason to get out of bed. Nobody tells you that you might not be able to keep working. Nobody tells you that you might have to drop out of college for a while. Your life literally grinds to a stop, and just when you think you’ve got momentum, you get sicker and need to stop again. It’s like driving a car while riding the brakes. All your peers, all of your friends will pass you. They will outstrip you by miles. But nobody wants to tell you that in a world where society is so fast-paced.
You have to go slower. You have to take longer. You have to put things aside and put your health first. And whenever you overdo it, your body punishes you for it. And you’re sick for days, weeks, trying to recover from something as innocent as a trip to the beach. And nobody wants to say a damn thing. Nobody wants to tell you that these things WILL happen because they don’t want to discourage you.
And you want to do your best, but you’re just so damn tired. You’re tired of being sick. You’re tired of not being able to keep up. You’re tired of cancelling plans. You’re tired of watching everyone else pass you. You’re tired of being so lonely that you just want to scream. You’re tired of having to just “push through it.” You’re tired of negative thoughts running through your mind as you wonder if life is worth living if you’re not getting to LIVE. Most of all, you’re tired of being tired.
And we, as a sick community, don’t talk about this. We don’t vocalize it. We don’t vocalize it because, if we do, people don’t want to be around us. We kill the mood; we bum everyone out. We can’t vocalize it. And because we can’t vocalize it, we are often heralded as being brave or being heroic. WE ARE NOT LIVING OUR LIVES TO BE HEROES. We are living our lives for the same reason healthy people are: We are living to LIVE.
I’ve been sick for almost four years now, diagnosed for about two. I can tell you from experience that there are days when I still feel as if I just got diagnosed. There are days when the reality of me being sick is just too much for me to handle. I still have bad days. Days when I can’t get out of bed because I don’t see a point. Days when I’m so sick of “pushing through it” that I just want to scream. I’m sick of being lonely, and I’m sick of being sick.
That’s OK.
That’s another thing nobody bothers to tell you. It’s OK to feel like this. It’s OK. Your feelings matter. Your feelings are valid. You matter. You are allowed to feel like this. You are allowed to be angry. You are allowed to be upset. Because, you’re human. You’re not a robot; you are a human being. You are going to have setbacks. You are going to fall. It’s gonna happen because you’re sick, and it is inevitable. When it happens, take a day. Take two days. Take a week, if you need to. But then, make a decision. Start back up again. Ease back into living. Start by taking a shower, and turning on the light. If you can do that, then I’m proud of you. If you can’t, and all you can do is get out of bed to get some water, then I’m proud of you. If you can’t do that, and all you can do is sit up in bed, then I am proud of you. And if you can’t do THAT, and all you can do is open your eyes and acknowledge the new day, then I am SO proud of you. There’s this stupid mentality that doing these things, taking things slow, is weak. And it’s not. Acknowledging that you are not OK and you need to start over is the strongest thing that you can do.
You are strong. You matter. You are allowed weakness because you are human. You can cry, you can laugh, you can live in your own way. You are allowed to live in your own way. Some days will be hard, some days will be lonely, some days will come to a halt.
And that’s OK
This article is printed with permission from Jasmine Miller.
