What Those With Rare Disease, And Those Who Don’t Have In Common

November 3, 2023

by Megan Marjorie

I remember during one of my many “solo” ICU stays I had this fantastic nurse who would seemingly constantly ask me how I was.

Each time I would smile, laugh, and give some joking little comment basically stating  “I was fine” when I clearly wasn’t. But I felt like in the midst of all the chaos. I felt like “pretending” I was alright, would help me gain some sense of control and some sense of self back.

It was the first day I felt like I could leave the bed without help, and with that newfound strength, I was determined to leave the bed and “get ready” by myself.

So for the first time in a couple of days. I clutched onto the walker by the side of my bed, waddled to the bathroom to get ready and I pulled out “all the stops.” And by “all the stops “ I mean I used the bathroom, brushed my teeth, gave myself a slight sponge bath, changed my gown, and washed my face. And to end this little excursion all I wanted to do before I went back to bed was to brush/do something with my hair. But I couldn’t will the strength to lift my arms to do so. 

Just by those small acts I had done. I seemed to have lost all strength in me. I was too exhausted to blink, let alone move my arms or even walk back to bed. So I sat on that walker, in front of the bathroom mirror, with tears of frustration and exhaustion brimming my eyes…stuck. Too proud to ask for help, I stared at the exhausted shell of a person staring me back in the mirror and contemplated everything I was not, and everything I wished I could be.

Moments later the nurse entered my room, and called my name, to which I meekly replied “I was in the bathroom “

She came in, and with a knowing smile, grabbed the brush out of my trembling hands, came behind me, and began to tenderly brush my hair, and shape it into a bun.

As she brushed my hair she smiled at me and tenderly said, “I know you laugh and smile because you’re a happy girl…. And you’re trying to be strong. But you don’t have to be strong all the time.  And don’t tell me you’re “not trying to be strong”, because I saw your list of rare diseases and I know exactly what you’re doing. I do the exact same thing when I’m in the hospital. It’s my own personal list of rare diseases that got me interested in medicine in the first place. You have been through hell the past couple of days, and it is more than okay not to smile, to cry, to rest, to get and ask for help,” she motioned to the hairbrush in her hand, “and to let yourself heal in every possible way.”

Not knowing how to respond to the exact words I needed to hear I smiled as muttered the words “Thank You”  as a few of the tears I had been painstakingly trying to hold back slid down my cheek.

She helped me up from the walker, gave me a hug, then slowly helped me back to my bed and proceeded to give me every medication I was about to ask for and that I desperately needed at that moment. 

These past couple of months I have faced a whirlwind due to my rare diseases that has felt like a category 3 hurricane and it doesn’t feel like the storm is going to calm down any time soon. Sparing some glorious miracles sprinkled between the chaos, it seems like whatever could go wrong has gone wrong. And whatever we couldn’t even imagine going wrong has surprisingly added itself to the itinerary. Which has left me exhausted in every single way one’s body, mind, and soul can be exhausted.

I’ve found myself metaphorically in a similar situation as that ICU room, trying to be strong, pushing myself, realizing I don’t have the strength I thought I had. Sitting down to do a task and bursting into tears when I realize I just can’t do this on my own.

Which has caused me to do something I never do.

At times I’ve had to put the smile and can-do attitude in the cupboard and admit, “I need help.” 

I’ve cringed as I’ve waited for the response to this honest plea, but almost always, I’ve been met with understanding, love, and patience.  80% of the time, I haven’t even had to ask. Whether it be a radiologist tech gently rubbing her hand on my arm, as a tender reminder I’m not alone while we both gaze at the ultrasound machine and watch my chest be carved into like a jack-o-lantern. 

Chores I need help with being done without a second thought. Not an eye blinked when plans need to be changed. “Just because I love you” gifts and acts of service. Cars are always ready and available to take me to any last-minute appointments. Gentle hugs and listening ears when tears won’t seem to stop. A hand on my shoulder and an understanding heart, when anxieties leave my head in a spiral. And just constant reminders from those I love reiterating the words of that sweet ICU nurse.

“It’s ok not to be ok.”

I’ve had help in great times of need. I’ve had a hand to hold, and a shoulder to lean on when I didn’t possess the strength to go forward.

Living with rare diseases sometimes just reminds me of my own humanity in that aspect, that I’m not always “strong” even though I like to be because I’m not meant to be. With illness being an active and unwanted part of your life you can feel like such a burden, feeling as though you’re the one who constantly needs help. But one thing we can all relate to as human beings, healthy or sick, is that sometimes we all need help.

More often than we are to admit, everyone needs a hand to hold, someone to remind them they aren’t alone, a shoulder to cry on, and someone to help bear the weight when we are too weak to stand on our own two feet.

Rare diseases make us feel like a burden because typically our struggles can be easily seen by those around us. But every human who has walked this earth has experienced some form of the emotional pain disease brings.

Diseases aren’t the only thing in life that brings pain. Suffering is a universal concept which causes the internal desire too often to jump to help others, because a large part of us know how relieving it is when someone gives us help. Because we all know what it’s like to be stuck, broken metaphorically – or in a disease case metaphorically and literally – unable to move forward without support.

But we still cringe when it’s us who needs the help. Yet we know to take the offered hand when needed. To take the hug when given. To take the help when offered. Then give the love and support in a way we can to someone else. 

We still expect to be strong. When life has shown us strength comes in vulnerability, we give others light when theirs is dim. And when the time comes and our light is dim, often through someone else the light we gave comes back to us. 

It’s okay to ask for help, because it’s the one thing every human can give, and the one thing every human needs.

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