Have you struggled with explaining how it emotionally feels to live with chronic pain? In the past I have referred to the Spoon Theory to explain how physically exhausting it is. But that wasn’t enough. Chronic pain also beats me up emotionally. The best description I can give to explain how it feels emotionally is to ask others how they would feel if they were betrayed daily by someone they love.
I ask them to think about someone they love dearly. How did they feel when they were let down, lied to, or tricked? I ask them to remember how much their heart hurt? Sometimes a betrayal can be overcome easily and at other times it will cause your world to come to a screeching halt. Can you recall a time when a betrayal or devastating loss hurt your heart so deeply that you were unable to physically function? This is what is like to live with chronic pain. I love my body, flaws and all. Just like my loved ones, my conditions cause my body to betray and/or disappoint me. But unlike my loved ones, my body does it on a daily basis instead of occasionally. If someone I cared about betrayed me at this level, I would (and have) have to evaluate our relationship and in most cases end the relationship or distance myself from that person. But there is no distancing myself from my body. And the only way to end a relationship with my body is by death, and NO that is NOT an option. I can’t sit down and have a heart to heart with my body and ask it to think twice before freaking out. I can’t avoid it. Instead I have to deal with the heartache everyday.
Some have asked if it is possible to get used to the pain and to just learn how to work around it. My answer would be yes if my pain was isolated to one area of my body. I could learn to work around a pain that was only in one foot and had a relatively stable pain level only because I would know what to expect each and every day. But as it is with most people who suffer from the same (Psoriatic Arthritis, MS, Fibromyalgia, and Degenerative Disc Disease) or similar conditions, our pain is wide spread. Not only do I never know which part of my body will act out or when, there is no way to predict the degree of physical pain either.
The best I can come up with explaining the emotional toll is to ask people to think about it this way: Plan out your week. Be sure to note all of your appointments, events, recitals, errands (dry cleaning, bank, etc), work or school schedule, along with tasks like laundry, dishes, cooking, etc… Now that you know what you need and want to accomplish this week, imagine waking up on Monday morning with swelling in your joints. Your body is tender and every movement inflicts unspeakable pain. You may, if you are lucky, to be able to check a few things off of your list for that day and think that everything will be alright, that you will just push the items you weren’t able to do onto another day. You go to bed hopeful that tomorrow will be a better day. Tuesday morning arrives and it greets you with an intense pain in your bones, escpecially in your feet and hands. Forget washing dishes, cooking for your family, running errands, etc… Using a stool or chair to cook or wash dishes is of no help when your hands are unable to grip a fork or hold a glass. Time to push all that you didn’t accomplish today and yesterday into the few days left in your week. By Wednesday you are thrilled that your bone pain has decreased, but sadly your body is over come with nerve and muscle pain, you may even feel as if your skull is swollen. You find it impossible to concentrate and have an overwhelming urge to sleep. If you are lucky you will awake on Thursday with a clear head and an overall lower pain level, then again you may wake up feeling even worse than you did the day before. If you are lucky you may feel like you have the stamina to attack one or two items on your list, but quickly become discouraged as you realize you need to choose one or two items from a long list of things you felt needed to be done. Tears roll down your cheek as you realize that you do not have the strength to accomplish what you have catorgized as most important. You try telling yourself that it will be okay, that there is always tomorrow. The problem with that is that there will never be a day in which your body doesn’t betray you. This is why it doesn’t matter how you feel on Friday morning. Every day is filled with some type of pain. Yes the degree of pain differs, but no matter what it still makes performing tasks that we never thought of as energy spenders too much to handle. So by Friday you are emotionally drained. You may have not expected to have crossed off every one of the items on your list, but you did hope to knock off a lot more than you actually did. You feel defeated. Depending on your physical state you may not accomplish anything or you may push yourself to get as much done as possible. Of course trying to get through a week’s list in one day will most likely result in being bed ridden for several days or weeks. So much for next week! The next day is Saturday and you find that you have the strength and energy to attend a family event. You try to enjoy it, but throughout the entire outing your guilt, anger, sorrow, and anxiety over not getting anything done during the week eats at you. Any fun that you permitted yourself to have is overshadowed by the darkness inside that loves to remind you that you are broken.
This what living with chronic pain is like. There is no catching up. There is never a pain free day. The guilt caused by missing important moments with your spouse or children rips your heart in two. Sometimes we feel so guilty for not being able to keep up with simple chores or commitments that we in turn punish ourselves by not allowing ourselves to have any fun. We figure that all of our low pain moments should be used only for crossing one or two more items off of our list. Thankfully many of us have learned that spending time with others or doing something just for the fun of it is not only acceptable, but that it is necessary. When I am out having fun, it is not because I finished everything I needed to get done or that I am feeling better. Instead it is because I realized that personal relationships and my own mental attitude is more important than never having dirty dishes in my sink. As you can see chronic pain reeks havoc on our minds and hearts. Every day as we face betrayal from our bodies, we are experiencing sorrow, anger, anxiety, and guilt. If people knew how hard we work at suppressing those emotions, they would never say “You’re too happy to be in pain“.
While I can’t end the daily betrayal, I can and have learned what I am or am not capable of doing during each of my various types of flare-ups. My wheelchair allows me to go places when bone pain in my feet won’t even allow me to walk across a room. I also know that when my neck is swollen and my brain feels like mush that I will do nothing but rest because my body won’t allow for anything else. Those are just a couple of examples, but even knowing what I am physically capable of during different flares isn’t enough to make planning simpler. And that is because the location and level of pain can change at any moment. I may start the day with swollen joints and muscles and end it with severe pain in my spine and feet or vice versa. Today started with hand tremors that made keeping my hand on the keyboard to type impossible, yet the tremors have decreased by this afternoon allowing me to write this post. There is no way to predict or plan around these conditions. So I live moment by moment in hopes of checking something off of my list while constantly battling the guilt, sorrow, and anger. I miss the days when doing my grocery shopping on foot didn’t result in hours or days of bed rest. I wish I never took for granted the ability to wash dishes and cook a meal without experiencing intense pain.
While smiles and laughter come easy to those who aren’t experiencing daily physical pain or heartache, it something that people like myself have to work very hard for. I have also learned that getting angry over things like someone not replacing the toilet paper or forgetting to take out the garbage is not beneficial to my mental state. I have been called relaxed and easy going. But the truth is not that I don’t care, instead by allowing myself to get worked up over something that isn’t going to cause harm to anyone the emotions that I am combatting come to the surface. These feelings not only cause me to overreact to certain situations, but they also increase my pain. Unleashing my stress, anxiety, sadness, and anger is no different than adding fuel to a fire.
It is my hope that our family, friends, and the general public will stop thinking that the only pain we feel is physical. It consumes our minds, bodies, and souls.
The Disabled Diva