Chronic pain is an intensely difficult for people to understand if they’ve never been through it first hand. And sometimes, even when you’re the one living with it every day, it’s still hard to understand.
The last few months, I’ve had pain that has just gotten worse and worse with very little relief. When you’re in excruciating pain every day, your brain chemistry changes and your personality changes. There are good days and there are bad days. Some days, I can go to the gym and lift heavy weights and ride my bike. Other days, I can barely get out of bed because the pain is so bad.
But with chronic pain comes a never-ending cycle of coping. This cycle is pretty similar to the stages of grief, but it’s not something you just go through once, it’s a continuous method of coping.
After diagnosis, there’s the initial grief…as anyone would grieve after receiving any life altering news. How did this happen? Did I do something to cause this? Will life be like this forever? Will the pain ever go away? How much longer will I be able to keep working? How will this effect my ability to be a mom as I age?
Getting a diagnosis hit me like a ton of bricks. My whole life, I had always felt like something was wrong, but when I got the diagnosis of Ehlers-Danlos Syndrome, it was like I had punched in stomach. I wasn’t ready for it. I wasn’t prepared to hear the words “daily pain” and “no cure”. After the diagnosis, there’s an initial grieving process that we must go though. I had to grieve the loss of the life that I had dreamed of for myself. I had to accept that this would be my life, for the rest of my life.
But there’s a whole other coping process going on as well. When the pain never ends, neither does the cycle of grieving. Once I grieved through the initial shock of the diagnosis, I picked myself and carried on with my life. But the thing is, there’s only so long that a person can stay strong for.
When it comes to chronic pain, sometimes it just breaks you. You can handle the pain and the other symptoms over and over, every day. You push through and enjoy your life. Until you just can’t take it anymore. You break down. You have to cry and let it out. The pain just builds up so much and you break. Your spirit gives in and it can’t endure anymore suffering and you panic at the thought of, “will I feel like this forever?”
One of the most terrifying feelings I’ve ever experienced is the fear of not knowing if the intensity of pain I was feeling at that exact moment would ever cease.
The fear then leads way to anger. Anger that I have to deal with this. Anger that there’s nothing I can do to make it go away. Anger that doctor’s don’t listen. Anger that there are medications and therapies out there that would help me, but I’m not allowed access to them because of the way our laws are set up. Anger that the people who make the laws have never actually had to deal with severe chronic pain.
Now, when I reach this point I’m the cycle, I’ve learned that I have to let myself feel the emotions. I have to remind myself that this is NOT permanent and I have to ride it out. If let myself forget, even for a moment, that “this too shall pass” (it may pass like a kidney stone, but it’ll pass), I get caught in a spiral of inconsolable grief and the desperation will consume me. And once I go down that rabbit hole, it’s much harder to claw my way back out.
There have been times that I’ve tried to just stuff my emotional response to the pain. If I pretend it’s not there, maybe it will go away. But let me explain why that doesn’t work…when I ignore it, it builds up inside of me. My anxiety spikes and (in the moment) it’s hard for me to figure out why. If I try to push through when my body is, very obviously, telling me to rest, I will end up deeper into that spiral of inconsolable grief.
Once you find the right doctor and you’re able to find the right treatments and therapies, you’re able to process much quicker to the ‘hope’ stage. This part of the cycle is tricky though because, sometimes, it could take weeks or months to find something that helps relieve the pain. Sometimes, you encounter doctors who are just plain unwilling to help.
The best doctors are the ones who take the time to listen and respect what you have to say. They’re the ones who understand that they don’t know what it’s like to live inside the torture chamber that is your body. Those doctors are the ones who give you hope.
And once you reach the hopeful part of the cycle, you don’t know how long it will last. Because, remember, you can only be strong and “just deal with it” for so long until the cycle starts all over again.
Chronic illnesses are unpredictable. You never know when a flare is going to strike or how hard it is going to hit you. But you have to be prepared, at all times, for your body to break out a sudden and powerful assault against itself. And sometimes that fear can be more crippling than anything. There’s a fine line (a VERY fine line) between listening to your body and resting and taking it easy versus proclaiming that you will not allow this illness to control your life.
If you’ve been fortunate enough to never feel the agony and despair that is chronic pain, count yourself incredibly lucky. But take a moment to imagine…imagine the pain you felt last time you were in a car accident or had the flu, now imagine feeling that pain all day, every day, for the rest of your life. That doesn’t sound very encouraging, does it?
You may be in more pain than you ever thought humanly possible, but you’re also a lot stronger than you’ll ever realize.
Happy New Year, fellow spoonies. May this new year bring you rest and comfort.