No Neat Label—A Word on My Chronic and Invisible Illness

*This was a scary thing for me to post, because it is so personal. Please understand these are my own feelings and opinions and not meant to define or represent any specific illness or any other person's experience. I post this mildly edited version of what was originally a private journal entry in the hopes that it will encourage others who are struggling to not give up.

It's okay to not be okay, as long as you don't give up. If you don't read anything else of this post, please remember those words.

Chronic illness is a weird thing.

When I first began to really feel the effects of my illness, I was in my early twenties. I had suffered from various ailments over the years, including pretty severe stomach problems which left me with more physical and emotional scars than I realized at the time. Sort of slowly and sort of all at once, my life was changed.

Suddenly, I had new limitations.

What I didn’t have was a neat label to explain it all with. I’ve been seeing doctors, chiropractors, nutritionists, specialists, and more doctors since I was thirteen years old, so I mean, of course there are labels. IBS. Fibromaylagia. Auto-immune disorder. Nervous system disorder. But no one thing really narrowly defines everything I feel. It's more like a mix of all of those things. It's weird, it's confusing, it's hard to explain. 

And so, years later, I’m still learning. My body changes every day, and new things crop up, and old things crop up. It feels much the same as it did back then—like it’s happening slowly, but at the same time, like it's sudden.

Slowly, I’m extra tired this week. Slowly, my muscles start becoming sore. Slowly, my bones start to ache. Slowly, my nerves are worn down. 

Suddenly, I want to cry at the thought of getting out of bed. Suddenly, my arms ache when I wash my hair. Suddenly, there’s pain in my hand just from chopping up a vegetable for my lunch.

And you know what? It sucks. There’s no candy coating that, mostly because I have to eat an anti-inflammatory diet and there’s nothing resembling candy in it. It sucks to dread waking up because you know you’ll still be tired. It sucks to cry yourself to sleep because even though you’re not doing anything but laying in bed, you can feel your pulse on every inch of your skin and like ants are crawling on your legs which are sore as if you worked out but you didn’t do anything but maybe walk like a normal person. It sucks when your hands feel like you’re soaking them in hot water, all hot and swollen and pulsing for no reason, or when you randomly wake up in the middle of the night feeling so nauseous you lie on the bathroom floor for an hour feeling like you’re going to throw up. It sucks not being able to go hiking or ride what used to be your favorite roller coaster. And it sucks more than anything to try to explain these things to people who either don’t really care, or don’t really understand. Sometimes, the not understanding is even worse than the not caring. 

And don’t even get me started on the well-meaning but unsolicited advice.

Do I give up? No. I still see doctors and try therapies and medicines and whatever else there is to be tried, because although I personally am not expecting to find a cure, I feel it’s my responsibility to find the best possible ways to cope and take the best care of my body as is reasonable.

So I smile, and I laugh, and most of the time I mean those smiles and laughs. I like being around my family and friends, I like going shopping and to the movies and to amusement parks. I am a happy person. I have many wonderful, meaningful moments and memories and people in my life. I have experienced amazing things.

I don’t want my body to be slow and tired and painful and broken, but it is, and I can’t change it. So I deal. That’s what chronic illness is sometimes, it’s dealing.

And I don’t want people to think that I sit in my room all day and wallow. But really, I don’t think that’s a problem, because most people don’t think that. Most people don’t even know I’m sick. I guess that means I’m good at being positive, and that’s good, because I want to be the kind of person that people think about and think, “Man, she’s so cheerful.” That’s my goal.

But, you know, sometimes I do sit in my room and wallow. I cry a lot. I have to think ten steps ahead of everything because I can’t walk too much or carry too many groceries home from the store or run for the train if I’m late or eat anywhere if I’m going to be out with other people at meal times or even work a normal job. And that’s kind of exhausting. And a lot of that exhaustion I go through alone, even despite the beautiful support system I have. Because at the end of the day, no one can feel what I feel for me.

Most of the time, I’m okay. I think I do a pretty good job of coping. I think I do better with every day that I make it through, I think I learn a lot. About me, about my body, about my family’s love, about endurance, about joy, about patience. And I like learning, so there’s that.

But sometimes, it just sucks. And with chronic illness, that’s okay. You don’t have to be sunshine every minute of the day just to make up for what you’re feeling. Read a book. Watch Netflix. Take five naps. Do what you have to do until the wave passes, until you can be your own personal semblance of normal again, until the next wave comes and you’ll start the process over.

Just keep going.

Don’t give up.

*I appreciate the love and support of those around me always, but please know that I do not need suggestions or advice about any health matters, whether they are medical or alternative medicines, doctors, or therapies. Your love is enough.

~Chelsea