What 'Chronic' Truly Means to a Chronically Ill Person


I miss the moments when I didn’t have to force a smile.

I miss the times when I didn’t have to pretend I felt fine while out in public, only to get into my car and cry in silence.

I miss feeling carefree and making plans without a moment’s hesitation.

Ultimately, I miss the “me” that got left behind.

It’s hard to embrace an illness that brings so much grief and agony into your life.  I can see myself in the mirror but I don’t always see the person staring back at me. Nonetheless, erythromelalgia is my new “normal” and yes, it’s chronic.

Whether it is a chronic illness, rare disease, visible or invisible disability, or an autoimmune disorder, there is one thing they all share in common – they’re chronic, meaning the condition or disease is long-lasting regardless of its nature.

Google’s first-appearing definition of “chronic” describes it as “(of an illness) persisting for a long time or constantly recurring.”

But to me, “chronic” means so much more than that…

“Chronic” embodies the years of health and wellness efforts I’ve made since my diagnosis. I’ve seen countless doctors and tried various recommended medical and alternative treatments. I’ve dabbled in herbal remedies and nutritional diets and supplements. I’ve meditated. I’ve prayed and begged for mercy (still do). Yet I’m still here with the same unbearable pain… tack on some anxiety and depression as a result too, of course. They seem to go hand-in-hand.

Why is that? *sigh*

“Chronic” represents the many tears I’ve shed that no one else sees. It epitomizes the isolation I feel at times. It also characterizes the guilt I’ve observed on my loved ones’ faces knowing there’s nothing they can do to ease my suffering.

I clench onto an ounce of hope because I refuse to let “chronic” take that away from me.

Hope for a cure?

Hope for a miracle?

Hope for better medical treatment options?

I don’t know what kind of “hope” I’m clinging onto.  Maybe it’s “all of the above.”

“Chronic” symbolizes not knowing what kind of day I’m going to face. I’d happily settle for stable “OK” days because bad days are beyond dreadful. They’re physically draining and emotionally devastating. A long, ruthless day of my body screaming inside really takes its toll on me mentally… only to repeat the same hideous cycle all over again the next day.

Holding a commitment to anyone or anything is like trying to breathe through a straw — a major challenge. As a result, some relationships and opportunities have sadly disappeared from my life.
“Chronic” signifies that a friend or family member has unintentionally hurt my feelings because they don’t understand what prolonged illness is. I don’t want to hear: “Are you feeling better now?” … or…  “You look great! You must be feeling good now.”

While I understand their intentions are kind, those phrases make it sound as if my condition is something my body will eventually fight off. “Chronic” isn’t the common cold or a light case of the flu bug. I can’t rest, take some medicine, and suddenly I’m “feeling better now.” It’s unlikely my health will miraculously be restored given the history, statistics, trials, and blogs I’ve read, and I’ve finally accepted that horrifying reality.

Try to envision yourself feeling pained and sleep-deprived yet fighting in a gruesome battle –

Every. Single. Day. Of. Your. Life.

Imagine that battle evolving into a raging war that you can never win against yourself… It just stays that way forever… That is what “chronic” feels like.

It’s a difficult journey but I still manage to enjoy my small victories and happy moments. My loved ones might understand me better if they educated themselves a bit on my illness. In exchange, it would help me in not feeling so alone. It’s OK to ask, “Could you please help me understand your condition and what I can do to help?”

That would mean the world to me.

I may or may not reveal the wholehearted devastation I’m truly feeling over my health; however, my response would be kind and welcoming for further conversation.

I’ve come to grips with the fact I will never be the person I once was before chronic illness became a part of my life but that doesn’t mean I’m not trying to be the best person I can be. I just need a little encouragement, understanding, love and laughter along the way.

We want to hear your story. Become a Mighty contributor here.

Lead photo by Thinkstock Images


Find this story helpful? Share it with someone you care about.


Related to Erythromelalgia

The 'Hidden Victims' of My Rare Illness

Kimberly and her husband, Rob Nobody is prepared to be diagnosed with a rare illness. It almost seems like one moment, life is normal, and then everything is ripped away. Life is never the same again. Between the unanswered questions, the repeated trips to the doctors and the illness, the person seems to wander aimlessly [...]

When One of My Students Noticed I Was Having a Flare-Up

As someone with a rare disease such as erythromelalgia, you sometimes become consumed with the misery of the pain. I’m a high school teacher and I am still trying to work full-time, which can be very challenging. I am so determined not to let this disease beat me, but there are days. Oh, there are days that [...]
male doctor talking with female patient by a window

What I Want Doctors to Know as Someone With Erythromelalgia

I am, by nature, an upbeat person — that is, when my disease isn’t trying to drive me into the ground. I teach high school (yes, I still teach despite my illness) and it is demanding at times. I love my job and I swear that it is what keeps me young. I’m not old, [...]
mom and daughter embracing

My Daughter’s Erythromelalgia Diagnosis Changed Her in an Unexpected Way

Pain doesn’t define who you are, but it can mold you in unexpected ways. I’ve seen it happen to my daughter, Lynn, and it’s only been a year since she was diagnosed with erythromelalgia. The “man on fire” condition has brought the best out of her. I can count and list many limitations and struggles she [...]