The reality of living with scoliosis.
DISCLAIMER: Everything I talk about here is my experience. It may not apply to everyone who suffers from scoliosis. I am only describing my own experience.
In the past I've talked about my scoliosis. For those who don't know what I'm talking about, here's a picture of my x-rays.
Yes, that is my spine. That is what it looks like when I'm standing perfectly straight. If this picture makes you feel uncomfortable, imagine having to live with it.
It was discovered late in my life, at 25. At that age, it is too late for correction. If discovered during childhood, it can be corrected via bracing. At my age, nothing other than surgery can fix it.
The surgery is called spinal fusion. Here's a brief description:
"Spinal fusion is a surgical procedure used to correct problems with the small bones of the spine (vertebrae). It is essentially a "welding" process. The basic idea is to fuse together the painful vertebrae so that they heal into a single, solid bone."
In other words, your back is cut open, bone is grafted to your spine along with screws and titanium rods in order to fuse part of your spine into a solid, unbendable bone.
Having met and talked to someone who has gone through the procedure, it is even more unpleasant than it sounds. Beyond the obvious problems that come with not being able to bend your spine, my friend described sensations like the following:
"The metal parts become intensely cold during the winter, and nothing can warm them up, you have this freezing cold inside you all the time"
"Your muscles and tendons feel like they're forcing against the metal, tearing themselves apart"
"It feels like liquid is flowing down inside you around the rods"
This is the only treatment for scoliosis in adults that is known to work consistently. I'm sure you can imagine why I'm not eager to go through with it.
I've talked to a lot of doctors and specialists. The best that I can do is manage the pain that comes with it and wait until the curvature worsens, at which point I'll need to have the operation or my bones could start crushing my nerves and vital organs.
I've been told that scoliosis of my severity is expected to worsen at a steady rate each year, roughly 1-2 degrees a year.
---
Let's talk about the pain.
Medical literature says that scoliosis is not a pain-causing condition. Instead, what happens is that scoliosis causes other problems such as spondylolysis - bone defects, stress fractures. The end result, in my case, is that it hurts.
A lot.
All the time.
It hurts as I'm writing this. It hurt when I went to bed last night. It hurt when I was trying to sleep. It hurt when I got up this morning. It hurt as I took a shower. It hurt as I made myself breakfast. It hurt as I walked to the metro. It hurt as I stood waiting for the train. It hurt as I sat in the metro's hard plastic seats.
It. Never. Stops.
You can get used to anything - you can ignore a bad smell if you hang around it long enough. You can get used to eating food you don't especially like. You can learn to endure unlikeable people. You can work an unpleasant job and get used to it.
Except for pain.
You can never get used to pain. It is as unpleasant today as it was years ago. It incapacitates me in the exact same way it did the first time I tried to stand in place for hours at a concert. It will make you cringe and will suck the enjoyment out of whatever it is you're doing, until all you want is to go home, collapse into bed and cry.
On a bad day, I will be in agony before I even reach the train that brings me to work. I will have so much pain I'll choke back tears while waiting for the metro.
Standing is one of the most painful things I have to do. Cooking, peeling eggs, washing dishes - all of these come with constant pain.
Sitting can be equally scary. My desk chair at home is comfortable and eases the pain - most other seats in the world do not. Going to a restaurant comes with a promise of an hour of pain. Road trips are agony. Plane rides mean being trapped for hours at a time with no possibility of relief from the pain.
Imagine being stuck in horrible pain, with no possible source of relief, for hours, and knowing this will never ever improve. Meanwhile no one around will see or even acknowledge your pain, because it is invisible to them. Externally, you look fine. Stop complaining.
It is a species of Hell.
---
To illustrate, let me share with you how my evening dinner with a friend went.
I arrived at a local Japanese restaurant to meet my friend. He already had a table - our chairs were tiny, back-less stools. From years of experience I knew sitting on one of these for longer than 5 minutes would be agony - so I started looking around for a better kind of chair.
Good chairs are hard to find in the wild - most restaurants either have cheap chairs or "stylish", completely non-functional chairs. In both cases the chair provides absolutely zero lower back support and makes me want to die within minutes.
The waitress approached me and asked what I was looking for. I asked her if they had any chairs with an actual back - she pointed to a stool with a 3-inch block of wood for a chairback.
Those don't work.
I asked her if they had any booths - booths are generally the least bad option, in most restaurants. Not comfortable, but less painful.
She said no.
I could see half a dozen empty booths just around the corner.
"What about those? Could we have one of those?"
"Ahhh, these are for six people. We don't have any for just two."
In most cases, at this point I would've given up. I hate having to ask for special treatment, and I hate being reminded that I have this problem - and so I would rather endure the pain than have to convince people that I actually need a proper chair.
That evening I decided to try and advocate for myself.
I pulled out my phone and looked up a picture of my X-rays.
"Look, I have this medical condition," showing her a picture of my spine. "Can I please get a proper chair?"
She didn't seem terribly interested in what I had just showed her.
"Let me ask my supervisor if we have any special chairs..."
Her supervisor showed up.
"No, we don't have any other chairs."
"Okay, so can we please have a booth then?", gesturing to the half-dozen empty booths.
The waitress chimed in "Ah, I don't know, you can take it, but you'll have to move if a party of six comes in..."
Half the restaurant was staring at me. I was thoroughly regretting standing up for myself.
"Forget it. I'll just sit here," walking back towards my friend's table.
The supervisor stopped me: "Ah, wait! You can have the booth, it's okay!"
And so my friend moved over to our new table.
I sat down, only to discover that for some idiotic reason, the booth's back was an entire foot too far back, and thus offered absolutely no support when sitting in a normal position.
Yes, I went through all this bullshit for nothing. I was in pain for most of dinner and spent the majority of the evening leaning against the wall, shifting positions every few minutes in a futile effort to find a comfortable pose.
Now imagine you have to go through this at EVERY SINGLE RESTAURANT YOU VISIT.
---
I've taken bottles and bottles of a variety of painkillers, knowing fully that using them consistently leads to liver and kidney damage. They give me no noticeable relief from the pain any more.
Travelling is a nightmare. Standing around waiting in line at airports, wanting to die in endless agonizing plane rides, spending entire days on your feet; I spent five days in Disneyland, in excruciating pain from morning to evening, chugging Advils desperately looking for some sort of relief.
I -hate- Disneyland.
Let's talk about exercise.
People love to tell me that this can be solved with the right exercises. Just do Yoga! Just do these stretches! Just strengthen your core muscles!
I've tried all this. I've spoken to dozens of specialists and tried dozens of methods. If there was something out there that provided pain relief from scoliosis, I'd know.
Exercise -hurts-.
Anything that involves stress on my back will in very short order put me in a huge amount of pain.
Running? The impact of my feet hitting the ground will be absorbed by my back, causing pain.
Squats? The weight on my shoulders is transferred to my spine. Deep squats hurt more the further I go.
Anything involving a deadlift is my personal Hell, and brings me to the verge of tears.
I used to enjoy exercising. I used to enjoy pushing my limits, seeing if I could lift more weight than I did the previous time. In the past two years I watched my lifting capacity fritter away due to ever-increasing back pain. I can't lift half of what I used to be able to do, and I only expect to become weaker as the pain worsens.
---
Let's talk about what scoliosis does to your psychology.
Being in constant physical pain is not good for your emotions. When you're at your absolute lowest, stressed out, tired, upset, depressed - your scoliosis will be there to provide you with a sharp, stabbing pain in your lower back.
Your scoliosis does not care that your boss just yelled at you. It does not care that you got into a fight with your friend. It does not care that your girlfriend just dumped you. If you feel like shit, it will be there to make you feel worse.
"Remember, your body is slowly breaking down and failing. You'll never get better. It's going to stop working pretty soon, and you'll die after going through decades of pain."
Imagine having that reminder of your mortality whispered to you every minute of every day. Or screamed at you, if you try standing for too long.
Remember the phrase, "at least you're healthy"?
You'll never be healthy. You'll never be pain-free ever again.
Expect no sympathy. As a healthy-looking fit young adult male, no one will believe that you might have some medical condition that requires accommodation. Telling people about it or showing them x-rays will lead to the exact same answers:
"Oh wow! You should get that fixed!"
"Why don't you just go to a chiropractor?"
"Can't you wear a brace?"
"Did you try going to a doctor?"
"Have you tried doing [this one variant of Yoga I do]?"
Yes, I have tried getting treatment. No, there is no treatment. No, there is no option other than surgery. Surgery would make my situation worse.
I hate my scoliosis. I hate that I have it. I hate that it could've been prevented had my parents taken me to routine medical check-ups. I hate that it puts me in constant pain. I hate that it prevents me from sleeping. I hate that it prevents me from doing things other people do effortlessly.
Call it pride, but I hate admitting weakness. I hate admitting to myself that I have this condition, this disability. And even more than that, I hate admitting this to others. I have far too much pride to ask for help or special consideration from others.
I see myself as a strong, independent individual. I am capable of anything, and I have no limits.
Asking for help means throwing all that out of the window. It means admitting I'm not strong enough to function as a normal human being - it means "I'm broken, please have pity on me." It means giving up status.
Having scoliosis means having to constantly choose between losing face or enduring pain.
---
There is no punch-line or happy ending to this. Scoliosis just makes my life miserable, and every day brings a new amount of misery.
So what can you do to help?
Well, if you're a massage therapist, you can give my lower back a massage, and I'll be forever in your debt.
If not, just try to not make it worse. Don't push me - don't shove me - don't tackle me - don't jump on me. If you hug me, please, for the love of God, don't squeeze me too tight, and don't squeeze my lower back. Whatever you do - don't pick me up. You'll cause me a week of pain if you do. The last person who picked me up (as I screamed "NO NO DON'T PICK ME UP") ended up getting punched in the face.
I assure you, that punch was not even one percent of the pain you inflicted on me that day.
In the past I've talked about my scoliosis. For those who don't know what I'm talking about, here's a picture of my x-rays.
Yes, that is my spine. That is what it looks like when I'm standing perfectly straight. If this picture makes you feel uncomfortable, imagine having to live with it.
It was discovered late in my life, at 25. At that age, it is too late for correction. If discovered during childhood, it can be corrected via bracing. At my age, nothing other than surgery can fix it.
The surgery is called spinal fusion. Here's a brief description:
"Spinal fusion is a surgical procedure used to correct problems with the small bones of the spine (vertebrae). It is essentially a "welding" process. The basic idea is to fuse together the painful vertebrae so that they heal into a single, solid bone."
In other words, your back is cut open, bone is grafted to your spine along with screws and titanium rods in order to fuse part of your spine into a solid, unbendable bone.
Having met and talked to someone who has gone through the procedure, it is even more unpleasant than it sounds. Beyond the obvious problems that come with not being able to bend your spine, my friend described sensations like the following:
"The metal parts become intensely cold during the winter, and nothing can warm them up, you have this freezing cold inside you all the time"
"Your muscles and tendons feel like they're forcing against the metal, tearing themselves apart"
"It feels like liquid is flowing down inside you around the rods"
This is the only treatment for scoliosis in adults that is known to work consistently. I'm sure you can imagine why I'm not eager to go through with it.
I've talked to a lot of doctors and specialists. The best that I can do is manage the pain that comes with it and wait until the curvature worsens, at which point I'll need to have the operation or my bones could start crushing my nerves and vital organs.
I've been told that scoliosis of my severity is expected to worsen at a steady rate each year, roughly 1-2 degrees a year.
---
Let's talk about the pain.
Medical literature says that scoliosis is not a pain-causing condition. Instead, what happens is that scoliosis causes other problems such as spondylolysis - bone defects, stress fractures. The end result, in my case, is that it hurts.
A lot.
All the time.
It hurts as I'm writing this. It hurt when I went to bed last night. It hurt when I was trying to sleep. It hurt when I got up this morning. It hurt as I took a shower. It hurt as I made myself breakfast. It hurt as I walked to the metro. It hurt as I stood waiting for the train. It hurt as I sat in the metro's hard plastic seats.
It. Never. Stops.
You can get used to anything - you can ignore a bad smell if you hang around it long enough. You can get used to eating food you don't especially like. You can learn to endure unlikeable people. You can work an unpleasant job and get used to it.
Except for pain.
You can never get used to pain. It is as unpleasant today as it was years ago. It incapacitates me in the exact same way it did the first time I tried to stand in place for hours at a concert. It will make you cringe and will suck the enjoyment out of whatever it is you're doing, until all you want is to go home, collapse into bed and cry.
On a bad day, I will be in agony before I even reach the train that brings me to work. I will have so much pain I'll choke back tears while waiting for the metro.
Standing is one of the most painful things I have to do. Cooking, peeling eggs, washing dishes - all of these come with constant pain.
Sitting can be equally scary. My desk chair at home is comfortable and eases the pain - most other seats in the world do not. Going to a restaurant comes with a promise of an hour of pain. Road trips are agony. Plane rides mean being trapped for hours at a time with no possibility of relief from the pain.
Imagine being stuck in horrible pain, with no possible source of relief, for hours, and knowing this will never ever improve. Meanwhile no one around will see or even acknowledge your pain, because it is invisible to them. Externally, you look fine. Stop complaining.
It is a species of Hell.
---
To illustrate, let me share with you how my evening dinner with a friend went.
I arrived at a local Japanese restaurant to meet my friend. He already had a table - our chairs were tiny, back-less stools. From years of experience I knew sitting on one of these for longer than 5 minutes would be agony - so I started looking around for a better kind of chair.
Good chairs are hard to find in the wild - most restaurants either have cheap chairs or "stylish", completely non-functional chairs. In both cases the chair provides absolutely zero lower back support and makes me want to die within minutes.
The waitress approached me and asked what I was looking for. I asked her if they had any chairs with an actual back - she pointed to a stool with a 3-inch block of wood for a chairback.
Those don't work.
I asked her if they had any booths - booths are generally the least bad option, in most restaurants. Not comfortable, but less painful.
She said no.
I could see half a dozen empty booths just around the corner.
"What about those? Could we have one of those?"
"Ahhh, these are for six people. We don't have any for just two."
In most cases, at this point I would've given up. I hate having to ask for special treatment, and I hate being reminded that I have this problem - and so I would rather endure the pain than have to convince people that I actually need a proper chair.
That evening I decided to try and advocate for myself.
I pulled out my phone and looked up a picture of my X-rays.
"Look, I have this medical condition," showing her a picture of my spine. "Can I please get a proper chair?"
She didn't seem terribly interested in what I had just showed her.
"Let me ask my supervisor if we have any special chairs..."
Her supervisor showed up.
"No, we don't have any other chairs."
"Okay, so can we please have a booth then?", gesturing to the half-dozen empty booths.
The waitress chimed in "Ah, I don't know, you can take it, but you'll have to move if a party of six comes in..."
Half the restaurant was staring at me. I was thoroughly regretting standing up for myself.
"Forget it. I'll just sit here," walking back towards my friend's table.
The supervisor stopped me: "Ah, wait! You can have the booth, it's okay!"
And so my friend moved over to our new table.
I sat down, only to discover that for some idiotic reason, the booth's back was an entire foot too far back, and thus offered absolutely no support when sitting in a normal position.
Yes, I went through all this bullshit for nothing. I was in pain for most of dinner and spent the majority of the evening leaning against the wall, shifting positions every few minutes in a futile effort to find a comfortable pose.
Now imagine you have to go through this at EVERY SINGLE RESTAURANT YOU VISIT.
---
I've taken bottles and bottles of a variety of painkillers, knowing fully that using them consistently leads to liver and kidney damage. They give me no noticeable relief from the pain any more.
Travelling is a nightmare. Standing around waiting in line at airports, wanting to die in endless agonizing plane rides, spending entire days on your feet; I spent five days in Disneyland, in excruciating pain from morning to evening, chugging Advils desperately looking for some sort of relief.
I -hate- Disneyland.
Let's talk about exercise.
People love to tell me that this can be solved with the right exercises. Just do Yoga! Just do these stretches! Just strengthen your core muscles!
I've tried all this. I've spoken to dozens of specialists and tried dozens of methods. If there was something out there that provided pain relief from scoliosis, I'd know.
Exercise -hurts-.
Anything that involves stress on my back will in very short order put me in a huge amount of pain.
Running? The impact of my feet hitting the ground will be absorbed by my back, causing pain.
Squats? The weight on my shoulders is transferred to my spine. Deep squats hurt more the further I go.
Anything involving a deadlift is my personal Hell, and brings me to the verge of tears.
I used to enjoy exercising. I used to enjoy pushing my limits, seeing if I could lift more weight than I did the previous time. In the past two years I watched my lifting capacity fritter away due to ever-increasing back pain. I can't lift half of what I used to be able to do, and I only expect to become weaker as the pain worsens.
---
Let's talk about what scoliosis does to your psychology.
Being in constant physical pain is not good for your emotions. When you're at your absolute lowest, stressed out, tired, upset, depressed - your scoliosis will be there to provide you with a sharp, stabbing pain in your lower back.
Your scoliosis does not care that your boss just yelled at you. It does not care that you got into a fight with your friend. It does not care that your girlfriend just dumped you. If you feel like shit, it will be there to make you feel worse.
"Remember, your body is slowly breaking down and failing. You'll never get better. It's going to stop working pretty soon, and you'll die after going through decades of pain."
Imagine having that reminder of your mortality whispered to you every minute of every day. Or screamed at you, if you try standing for too long.
Remember the phrase, "at least you're healthy"?
You'll never be healthy. You'll never be pain-free ever again.
Expect no sympathy. As a healthy-looking fit young adult male, no one will believe that you might have some medical condition that requires accommodation. Telling people about it or showing them x-rays will lead to the exact same answers:
"Oh wow! You should get that fixed!"
"Why don't you just go to a chiropractor?"
"Can't you wear a brace?"
"Did you try going to a doctor?"
"Have you tried doing [this one variant of Yoga I do]?"
Yes, I have tried getting treatment. No, there is no treatment. No, there is no option other than surgery. Surgery would make my situation worse.
I hate my scoliosis. I hate that I have it. I hate that it could've been prevented had my parents taken me to routine medical check-ups. I hate that it puts me in constant pain. I hate that it prevents me from sleeping. I hate that it prevents me from doing things other people do effortlessly.
Call it pride, but I hate admitting weakness. I hate admitting to myself that I have this condition, this disability. And even more than that, I hate admitting this to others. I have far too much pride to ask for help or special consideration from others.
I see myself as a strong, independent individual. I am capable of anything, and I have no limits.
Asking for help means throwing all that out of the window. It means admitting I'm not strong enough to function as a normal human being - it means "I'm broken, please have pity on me." It means giving up status.
Having scoliosis means having to constantly choose between losing face or enduring pain.
---
There is no punch-line or happy ending to this. Scoliosis just makes my life miserable, and every day brings a new amount of misery.
So what can you do to help?
Well, if you're a massage therapist, you can give my lower back a massage, and I'll be forever in your debt.
If not, just try to not make it worse. Don't push me - don't shove me - don't tackle me - don't jump on me. If you hug me, please, for the love of God, don't squeeze me too tight, and don't squeeze my lower back. Whatever you do - don't pick me up. You'll cause me a week of pain if you do. The last person who picked me up (as I screamed "NO NO DON'T PICK ME UP") ended up getting punched in the face.
I assure you, that punch was not even one percent of the pain you inflicted on me that day.
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