The Mighty Logo

When Life With Chronic Illness Feels Like Broken Glass

The most helpful emails in health
Browse our free newsletters

That’s the only way I can describe it. It feels broken – my life, my heart, all my strength. It’s weird how it comes on, sometimes like a freight train barreling toward you, other times like a butterfly landing on your shoulder – but it’s always there lately. Sometimes it yells, other times it whispers. But I can tell you this, depression waits for no one and nothing.

There are so many things I want to say, do, feel – but right now, all that exists are tears and silence. Pain. Exhaustion. Malaise that matches the ache on my skin. I have a headache, constantly now. From the moment I open my eyes until the moment I go to sleep I feel like I am tensing my jaw, no matter how hard I try to relax it. My stomach aches, because the medicine is known to do that so it was kind of expected. What I didn’t expect was the nausea, the constant burn, the repeating of everything not water – and sometimes even that.

The ache in my shoulders and neck is continuous, meaning there is no relief. One pillow, two pillows, 10 pillows – I have officially become the Princess and the Pea. My ribs feel every spring in my mattress, my blanket sometimes too damn heavy and other times too fucking light. Doesn’t matter the blanket, it’s just the constant night sweats that leave me either sweating to death or chilled to the bone cold.

The fatigue borders on the edge of tears. I cannot deal with the slightest bit of a shake up. I am too tired to deal with change. I am sad. Sadder than I’ve ever been, ever in my life, because now I can recognize what it is and I guess I’m also not being allowed to bury it anymore.

My skin hurts, so much so that I can’t wash my face in the shower – and have opted to just use the bathroom sink. I am dizzy, almost constantly, and have fallen more than once, in my house and outside. My feet ache, in shoes, out of shoes, standing, sitting. I barely eat because everything I eat, good or bad, causes some type of intestinal distress. I struggle with a lot of shit I shouldn’t, this weekend I walked around my house like Barbie because I couldn’t extend my arms without some type of pain.

I took the train to therapy alone and freaked out approximately 1.9 million times. Why? Who knows? All I can say is my anxiety is at an all time high. I have spent more time than I care to admit just trying to catch my breath. My eyelids hurt when I blink, and I can actually hear myself blinking – an interocular pressure problem that can sometimes develop in people with the type of lupus I present with. To tell you I am tired with just the knowledge of this would be an understatement. There are so many random things I experience on a daily basis, you might lose faith in whatever you believe in. This can shake you to your core, deep with pain and the perception of what the rest of your life will be.

My biggest anxiety is being in pain for the rest of my life. That I will leave this planet, this space – scared, in pain, wishing to leave. That’s the thing that keeps me up at night lately. That I won’t be thankful in my last moments for the laughs or the tears or the memories. I worry about not being myself anymore, because I haven’t felt like myself in a really long time.Symptoms have a way of affecting your day to day life – getting up and moving is hard sometimes without crying, talking to people is sometimes hard because I can’t find the words to explain what I want to say or how I feel. I really don’t know what would help because I am learning too, learning to try to live with this, to overcome it and to move past the trauma that has dragged all of this to the surface.

Do I know if this feeling will ever go away? I am not so sure. Do I want it to? Yes, yes I do.

More than most will ever know.

Getty Image by Birute

Originally published: April 18, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home