Why I Rarely Share About My Dark Moments With Chronic Illness

I’m lying in the bathtub. My mother put me there to try to make it better.

“It.” We still don’t know what “it” is. What’s wrong with me?

Naked. Exposed. Defeated. Moving even an inch shot searing pain through every joint…from my jaw to my swollen toes.

My mother knelt down helplessly. For weeks on end she had tirelessly tried to do anything to ease the hell on earth I was living. I knew every fiber of her being wished it was her and not me.

“This isn’t helping! It’s making it worse!” I cried. I had to get out. I wanted my bed. I wanted sleep. My only solace from the agony.

But I couldn’t move. It felt as if my body was covered in cement. Utterly impossible to lift myself up. I was stuck. Confined to this bathtub, the vessel by which a “normal” human relaxes, washes away their sorrow.

But not me. What was happening to me? Would I ever be clean of this monster wreaking havoc inside of me?

“Please, I just want to get out!” I begged.

“I’ll get your father and brothers to help,” she replied

“No! No.” I was 19. The thought of my father and brothers seeing me naked…exposed…sent a pit of shame to my core.

Defeated. I was defeated. I was so exhausted I could barely see straight. Or maybe that was the pills. So many pills.

My mother, ever resourceful and desperate to do anything to help me keep my dignity masterfully pulled me out of the tub. The instinct of mothers to help a child at all costs is remarkable.

I inch step by step towards my bedroom. Stopping every few seconds because I’m lightheaded…always lightheaded.

My mother dresses me. I crawl into bed.

I don’t move. I can’t. The slightest shift is unbearable.

I close my eyes. But sleep is a distant memory. The medicine refuses to let me drift away.

What’s wrong with me? When will this be over? There is no end in sight.  Somebody help.

I finally drift into oblivion. For just a few short hours of ignorant bliss.

And I wake. To live this hell another day.

This moment in my patient journey stands out among many of the devastating snapshots in time that I endured. A moment in time before I received my psoriatic arthritis and Crohn’s disease diagnoses. It was a moment that I felt I had not only lost my dignity, but lost myself. What had happened to that vibrant, positive spirit I once had? The pain was all consuming, it robbed me of who I was.

As a patient turned advocate, I often find myself sharing the triumphs of my journey. How my experiences as a patient have ignited a passion inside me and given me something to fight for. I rarely share the dark moments, because it is in my nature to always see the world through rose colored glasses.

And I would rather leave people feeling inspired than with feelings of despair. But this was my reality.

And sadly, this is the reality many autoimmune patients face each and every day. I would be doing the community a disservice by failing to paint a picture of what it really means to live with a chronic illness.

So here’s to the dark moments. The moments we look back on that send a chill through our spine. The moments we remember so vividly that we can almost feel the agonizing pain once more. The moments that define who we are.