You Must Understand, Pain is Pain!
Last updated: March 2023
I wish I could describe the chronic pain from my NMO that I feel every day. I also wish I could explain the pain that the community feels on a daily basis - that not everybody’s pain is the same. Not everybody has the same pain tolerance or the same ailments.
It's hard to capture and relay that you have chronic pain to somebody who doesn’t. It's just a hard concept for them to grasp. Trust me - I’ve been there, and I've tried.
NMO means a new pain every day
Over the last five years, I've gotten new aches and pains every day: different ones, the same ones, the usual ones, and suspicious ones. Any type of pain, I have it.
It's from anywhere between the extensive damage from my spinal cord injury to bone disease and other underlying health issues. There’s not one area of my body that does not experience pain. When they are in pain, most people lie down and go to the emergency room and have somebody there to help them get their pain better.
People like us who are chronically ill with NMO or another illness do not have the option to fix the pain. many of us are on off-label medication. Many of us have doctors who are not experienced in our specific diseases.
Our doctors don't understand how bad NMO chronic pain is
Not all doctors understand our pain and what could potentially help. NMOSD is still so new, but we learn new things every day.
The medication doesn't help
One thing that is hard for researchers to find answers to? Medication for pain that will fix many of the symptoms we feel. However, we are not yet at that point in medicine.
I hope that one day we can get there so that people with NMO in the future don’t have to experience the immense chronic pain that we experience on a daily basis.
Learning how to live again
My skin hurts. My bones hurt. My eyes hurt, and my spine hurts. My feet hurt. My knees hurt, my bones hurt, and my hips. I have pain far and deep inside my body, all the way to the very surface level.
My whole being is consumed with chronic pain, which is something that you and I have a hard time understanding. How is it that I am capable of still leading (or trying to lead) a normal life? And how can I keep finding ways around pain?
I’m still learning. I’m learning my limits, and I’ve learned to be stern with myself. I have to listen to my body before I listen to the needs of my still-young brain.
Even those close to me can’t understand my pain because I have a totally invisible illness. This means you couldn’t see anything wrong with me if you just looked at me in the crowd. But the fire that rages on inside of me is explainable.
Standing up and advocating - it's what I'm meant to do!
I think I like to talk about this subject because it’s important to advocate for your pain and stand up for it. My advice? Do not let people negate your pain, diminish your disease or tell you what you’re experiencing isn’t real.
Others' lack of knowledge and ignorance is a disease of their own; unfortunately, our disease is something we can’t fully explain.
Finding sympathetic supporters
I’ve often had a hard time because people don’t realize the depth and detail of my pain until you are around me 24-7. Even my mom (who is around me 24-7) is still baffled at the pain I get from my NMO. And there's NOTHING I, she, or any doctor can do.
Find people around you who don’t necessarily understand what you’re going through but are open to learning how they can help you.
A rare disease like NMO comes with a complex list of symptoms that can’t be resolved with just one pill.
Pain is pain. We need to try to make the world understand this.
Has NMO impacted your ability to keep a job?