When Remaining Stoic Is a Struggle in My Life With a Rare Disease

I was once called “stoic” when I was working, because of the way I got on with my chronic health issues without fuss. I was always cheerful, smiling and putting others first. I kept working full time with that stoic attitude and nature — until my body physically would no longer let me.

Even with a permanent colostomy, rheumatoid arthritis, and a rare disease which has left me with widespread broken bones and an unstable spine, I am still stoic, happy and positive — on most days!

It’s a Rare Day

It is a rare day that sees me crushed. This morning was the start of a rare day. The pain in both my legs was unrelenting and my back refused to allow me off the bed. Even though I have a high pain threshold, just for a moment, I felt a wave of despair flow over me. I felt trapped by a body determined to debilitate me in a progressive and unrelenting manner.

It wasn’t self-pity. It wasn’t even regret. It was despair that arises from chronic, debilitating, overwhelming pain. On top of that my stoma had a blockage as a result of needing higher doses of pain killers.

I needed to find the strength, and even courage, to get on my legs, get off the bed and go to the bathroom. Sounds so simple in words, but the reality of doing it was anything but simple. It was terrifying. Every attempt at movement resulted in a blood-curdling scream. The pain was so raw, as if having surgery without anesthetic.

I eventually managed to sit on the side of the bed and allowed the tears to flow. Did it help? A little, yes. The tearful moment allowed me to take a deep breath and pray for the strength I needed to get upright and move to the ensuite.

It allowed me to become stoic again.

I don’t want my disability and rare disease to dictate my life completely. I want to remain stoic. I want to celebrate my daily achievements, like getting upright. I want to be thankful if I can eventually make it to the bathroom.

I want to always focus on what I can do, rather than on what I can’t.

I’m Not the Only One Who Is Stoic

There will be many people today with a chronic disease like rheumatoid arthritis, lupus, multiple sclerosis, cancer or a rare disease walking our streets, sitting in work meetings, caring for their children, looking like they have everything under control. Their pain will be invisible to most. The reality is they too would have struggled this morning, wondering how they were going to get through the day, or even how they were going to make it to the bathroom, just like I did.

They will be trying to fit into the norm, when their own normal is so different to most healthy people. They are stoic and courageous, but they probably don’t think they are.

For those of us battling chronic disease, knowing we are not alone in the battle is so important. In my experience, speaking to others who understand what it is like to wake up day after day with the same pain and the same physical struggle is crucial to keeping strong.

I’m so thankful that I have been blessed to administer online support forums and know I don’t journey alone. Others living with chronic disease have stories that are all unique and their strength of spirit is inspiring and uplifting. They are nothing short of stoic!

I am not the only one who is stoic. I am part of an amazing community of others with chronic illness who are stoic too. How about you?