Feeling 'Lost at Sea' In Life With Chronic Illness

This year sucked.

Or has it been the past several years?

I wish I could dignify that with an answer, but I can’t. That’s not the way chronic illness works. It’s not a steady stream of “bad luck” or “good luck.” It’s a day-by-day, minute-by-minute fight. I might wake up, drink my coffee, and do some chores. By evening, I might be in the hospital wondering if I’ll ever catch a break.

Chronic illness is different for everyone. Some manage it, and some don’t. One thing is for sure, though: life doesn’t stop because you’re not feeling well. When I heard my diagnosis — “autoimmune disease,” I wasn’t upset. Finally, I had some answers. We’d treat it, and my life could go back to normal.

I was naïve, but I thought I was being reasonable.

In my mind, I’d found what I’d been seeking: I had a name for my disease. The journey was complete; the finish line was in sight. My feet were firmly on the ground, and my plans for the future were within my grasp. I wish I could remember that woman — the woman who believed she’d figured it all out.

She was wrong.

I miss the me I used to be. The new me is different. I am a woman lost at sea. I’m not talking about calm waters, either — I’m talking about a raging sea.

Every day, I wake up and…blink.

The waves roar, drowning out all other sounds. I struggle to find my footing as the current pushes and pulls me. Get up, I think. You can fight this. So I try to fight.

I open my eyes and…blink.

I search for the shoreline. To me, the shore means hope. Purpose in sight, I put one foot forward, then the next. With every step, I wade through turbulent waters. Over my shoulder, I carry a heavy net. In it are the things that are most important to me: my children, my family, my friends, and my hopes and dreams. My goal is to get to the shore without having to remove anything from the net, but it’s so heavy. Instead of rope, the net is forged from steel, fastened by a disease I neither want nor understand. It feels too heavy for me to carry.

Some days, the waves are calm, and I can push through the current. Other days, my body gives out beneath me. Some days seem hopeless. Other days, I believe I can make it beyond the shore.

Most days, I make it to the edge of the shore and collapse on the sand. I do what I can to protect the precious things in my net, but it’s never enough. I lie on the sand at the edge of the sea and think, “If only I could just do more.” Perhaps a healthy diet, perhaps yoga, perhaps advocating for myself at the doctor’s office. There is no cure, but I can do little things to make my life easier, right? I’m tired, though. So tired. My eyes slip closed, and the tide comes in, dragging me back out to sea. Sometimes it takes weeks for me to see the shore again.

Those days are bad, but they are not the worst.

Other times, I get to the shore and feel the sun. I walk along the beach for days. When I can, I take out the things in my net and bask in them, treating each like a rare gem. For a small amount of time, I feel “normal.” Hopeful. Not adrift. I remember what I’ve been missing. I remember me. But it never lasts.

One day, I’m me and the next…I blink.

The pain of what I’m missing is fresh in my mind.

That is what chronic illness feels like to me. It’s different for everyone, but I wanted to give my experience a voice. Who knows? Maybe it might help someone. I have little to give, but sometimes, when I can rifle through my net of hopes and dreams, I find words to share. On the good days, I can leave them on the shore — as little shells for others to find.

Maybe someone will pick them up, place them against their ear, and hear the stories of those who are lost at sea.