It’s OK Not to Be OK


I’m not OK.

It feels really gratifying to type those words.

The secret is out. The burden lifted. I can breathe a little easier.

After a long week of pretending to be OK, I’m exhausted.

I’ve lived with reflex sympathetic dystrophy (RSD), also known as complex regional pain syndrome (CRPS) for 12 a half years now. I’ve learned a lot about myself and the world in that time. I’ve developed a specific skill set that helps me navigate a world not created for those living with disabilities or chronic pain.

One of those skills is becoming a magician or illusionist of sorts. I don’t provide entertainment, nor do I dazzle crowds with my trickery or illusions. I can’t make people disappear or pull a rabbit from a hat.

What I can do is fool you into thinking I’m doing OK. 

When you’re diagnosed with a serious chronic illness like RSD/CRPS, you aren’t given a guidebook on how to cope or deal with the numerous challenges that lie ahead. I learned early on that presenting a strong, brave face coupled with a calm demeanor seemed to be the behavior people wanted to see.

When I hide my symptoms, severe pain, emotional distress, lack of sleep and try to be as a “normal” as possible, I am met with comments of praise and admiration, not annoyance, dismissiveness or pity. It makes the people in my life more comfortable around me. They don’t have to hear or see my challenges. The impact on them is minimized.

With my doctors, I am honest about my symptoms, but I always feel the need to rein in the true impact of them and the feelings I am experiencing. The words “be stoic” are always on repeat in my mind, as I mask my true pain levels, fear, sadness and tears from my medical providers.

I’ve always worn the stoic label as some sort of badge of honor, but at what cost?

As this disease progresses, it’s becoming more challenging to masquerade as someone who has it together 100 percent of the time. My smile isn’t hiding the pain as well. Makeup doesn’t quite conceal the sleepless nights like it used to. The jokes and laughter don’t come as easy anymore.

I used to feel the only suitable way to live with RSD/CRPS was to be a stoic fighter and to always project an image of strength, positivity and hope. Never reaching out for help or assistance.

But is that the only honorable way to live with this or any other chronic illness?

While those are admirable qualities, having the ability to be vulnerable and transparent are just as praiseworthy.

So today, I’m kicking my stoic label to the curb.

The pressure I feel to always project an image of strength, hopefulness and grace while living with RSD/CRPS has simply become too much.

The truth is I am struggling.

I don’t always feel positive, hopeful or strong. 

I can’t do everything on my own anymore. 

I often feel hopeless.

I am scared.

For me, and many others, admitting these things are terrifying. Ripping the mask off and exposing our vulnerabilities is akin to uprooting a child from their security blanket. 

It’s OK to feel weak, scared or hopeless. Express your anger. Share your fears. There’s no expectation that you must always be an unwavering pillar of strength and grace.

There’s no right or wrong way to live with a chronic illness.

Lead photo source: Thinkstock Images

It’s OK not to be OK.


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


Related to Complex Regional Pain Syndrome

Why I Can’t Stop Watching Competitive Sports as Someone With Chronic Pain

They stick the landing. They touch the pool wall edging out their competition. They spike the ball. I watch with anticipation and feel a sense of relief as I watch their dreams come true. I tear up knowing the hard work, sacrifice, determination, and luck it took to get them there. Nearly every athlete is bandaged, taped up, [...]
digital painting of girl sitting lonely in the moonlight, watercolor on paper texture

When Chronic Illness Changes Your Life in the Blink of an Eye

You never know just how quickly things can change until it happens to you. Going into my volunteer trip to India, I saw myself as a happy, healthy individual, but when I was taken to the ER on my last night there, not being able to move my swollen and extremely painful left leg I had no idea [...]
Nora Wagner on her high school graduation day

What It’s Like to Be in High School With an Undiagnosed Condition

My freshman year in high school will always stick out in my mind for more bad reasons than good.  Like many students starting high school, it was a rough transition: meeting new friends and teachers, learning to navigate a new building and trying to find out just who you are. For me, it was even [...]
Girl sits on the edge of cliff and looking at sun valley and mountains

Chronic Pain Has Become More Difficult Than the Mountains I Climbed

Since I woke up this morning, this day has felt odd. The skies were angry and storms passed through every hour, darkening the sky to a night time gray. The rain was heavy, furious as it fell, creating a calming yet aggressive presence on our tin roof. The winds sliced through the trees bringing branches [...]