This post was originally posted on Blogger July 8, 2024, and updated July 3, 2025.
You can't know how difficult life is living in a constant state of pain until you live it yourself. No matter how hard you try, you really can't know. I have Complex Regional Pain Syndrome (CRPS), a painful condition of the central nervous system that is always sending pain signals to the brain, disrupting the neural pathways that make up your brain. I have CRPS in both my legs in their entirety. It's one of the most painful diseases known to man, and rated at a 46/50 in the McGill Pain Index.
CRPS ranks among the most painful medical conditions known to science, scoring a staggering 46 out of 50 on the McGill Pain Index. Over the years, I’ve met many people who shared with me their struggles with chronic pain. Most admit that they never truly grasped the gravity of what having chronic pain meant until they experienced it or saw it in someone they care about. The realization quickly hits: chronic pain isn’t just a physical challenge—it affects every aspect of life, from performing basic tasks like reading and having conversations, to ruining the ability to think clearly.
Everything revolves around pain management. The brain itself changes as a result, making this responsibility even heavier. The toll this takes is not just physical; it’s emotionally and mentally exhausting.
Chronic pain's deep reach into the mind, heart and soul can be paralyzing and uncomfortable. It causes us to doubt ourselves, and our purpose, how useful we are and can leave us feeling frozen and isolated. It seeps into every crevice of your being, until one day there's no cracks left for it to seep into, and you realize you are at your limit. Pain has overwhelmed the brain and body in its entirety. Over time, chronic pain begins to define us more and more deeply, with society's labels and labels we put on ourselves and each other. These labels might not even be entirely accurate, but they are governing our days. Those labels then become our truth. Over time these "truths" erode away at our self esteem and we begin to believe the lies it tells us about our value and self worth.
According to definitions:
Chronic pain infiltrates every corner of your life. It questions your identity, your purpose, your worth. It creates isolation. Over time, it chips away at self-esteem, fueled by both societal labels and internalized beliefs. Eventually, those labels can feel like the truth.
Chronic pain's strong hold doesn't stop with the individual suffering with chronic pain. It also grips the family unit tightly, while it slowly destroys everything you've built and worked for in life. It makes having friendships harder too. When it came down to it, only a few of my friends took the time to try and understand, and even fewer that stuck around past the first year. I don't blame them, I didn't understand what was happening to me. I was always going to the doctor, and could not do the things I was used to doing. Being in that much pain was hard to navigate, especially at first. There was so much going on, and I was so overwhelmed, that I don't remember much of the first five years - they were a blur of pain and survival. The friends I’ve made after my fall and diagnosis of CRPS don’t know me any other way, and they accept me for who I am.
I remember a conversation early on with a fellow CRPS warrior who told me it would take 10 years to find the right treatment plan and another 10 to rediscover my purpose. She wasn’t wrong. It’s been 16 years, and only now do I feel like I’m beginning to thrive again.
So how do we live a meaningful life with something so consuming?
The answer in simple terms? You do the work. You work hard on yourself. You take one forward step at a time. You build a support system. You go to therapy, join support groups, read others' success stories. You become your own advocate by learning everything you can about your condition and read inspiring stories about people who have your illness and how they overcame their obstacles. All while managing your pain, your mental health, and the demands of daily life. It's not simple. It takes time, patience, and persistence. It's complex and takes time, is easier said than done, and is something that doesn't happen overnight. It takes some time to understand what's going on so you can build your support system, and find what works.
One crucial strategy? Get organized.
One other thing also helps set you up for success, and that is making being organized a priority. Living with chronic pain is a lot of work and it affects your brain significantly. Brain fog is a real thing, and you can forget something as soon as it's been said, and again when you ask the person to repeat it. It's also hard to keep track when having a conversation. I get lost where we are in the conversation, and what it’s about, often, and need cues to remind me what is being talked about. When you live with chronic pain, your day to day functions are competing for attention with the pain signals assaulting your brain, and it makes processing and doing things so much harder. Brain fog also causes cognitive processing issues and that means I often need what was said explained further so I can process and respond correctly. I need to write a lot of stuff down, have lists and have multiple reminder systems in place, as well as people in my support system to remind me, in order to stay on top of everything. I need a lot of help to keep track of simple things, and I find this aspect of my chronic pain very embarrassing. It makes me feel bad about myself and I get trapped in thinking I’m not so smart. Recently, to help with that, I got an Amazon Echo to use as a sort of personal assistant to give me verbal reminders and alarms that I tell it to set, and it's been a great help. I need a lot of verbal and written prompts and reminders throughout the day and this means I can be a bit more independent with that.
In addition to my Echo, I have my phone and certain apps that help with my mental health and organization, and an old fashioned dayplanner, to keep track of things I need to keep track of. I still require a lot of help in staying organized, but I can say that I'm proud of myself for needing the help a little less. It's been humbling to have to accept this is who I am and to adapt to relearn basic organizational skills and executive functioning as an adult. I also have to keep in mind that they may need adjustments to be something realistic and attainable for me that will also click with my brain.
What’s important is that I’m improving. I’m more organized now. I'm finding what works for me. Accepting help has been humbling, but it's also been a big part of my growth.
I’m learning how to adapt, how to manage, and how to inch toward independence. None of it would be possible without the unwavering support of my mom. Her kindness, encouragement, and steady presence keep me going.
CRPS and chronic pain have tried to take everything from me. On the surface, it may look like they’ve succeeded in some ways. But look closer and you'll see the resilience, the fight, the effort I’ve put into preserving who I am. Chronic pain has not defeated me.
Has chronic pain changed you? What have you discovered about yourself through the struggle?
Let's talk. Your story matters too.
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
You don't have to manage your chronic pain journey alone. Join our community of pain warriors by signing up for my newsletter on the home page or below any blog post on my website https://meredithhutton79.com/meredithhutton79. As a welcome gift, I'll send you two complimentary pain-tracking pages and a 200-page household planner to help ease your mental load.
For more resources, browse my collection of chronic pain-themed trackers, planners, and journals at my shop: https://meredithhutton79.com/shop