How do you explain to someone what you are capable of doing? Well, the easiest way to explain is not with words but with actions – you show them what you can do. But how do you explain to someone what you can’t do? There is no action to show them, and words are often insufficient. Such is the predicament of the person living with chronic pain.
How do you let those around you know what your pain is like? How it limits your mobility? Limits your function? Limits your ability to provide for your family and contribute to keeping the household running? Again, words are insufficient, and there is no action that explains the inability to act.
And so, you do your best. To explain. To try and justify why you cannot be what they still expect you to be. And a story begins to emerge. A narrative. An explanation of how you came to be the way you are.
This story, this narrative, can prove quite useful. After all, those around you do need to know what your limitations are. They need to know what you can and cannot do. How they can help and what it is that you can still do for yourself. But the story can take over. It can come to define you. And to limit you.
Research has borne this out – the need to explain your situation can limit your ability to improve. The depth of emotion that drives the telling of your story is directly related to the amount of pain you live with. But the more desperate you are to explain, the more severely you suffer from your pain. Explaining it this way risks making it seem made up, or embellished. As if it is “all in your head.” But of course, you know it’s all true, this story of how you came to be in pain. So, to help you better understand about how the truth of your story can hurt, let’s look at a condition that is often associated with chronic pain: PTSD. Post-Traumatic Stress Disorder.
According to the National Center for PTSD, there are four types of PTSD symptoms: 1) Reliving the event (also called re-experiencing symptoms); 2) Avoiding situations that remind you of the event; 3) Negative changes in beliefs and feelings; and 4) Feeling keyed up (also called hyperarousal).
Reliving the event, or trauma, means that memories of the traumatic event can come back at any time. You may feel the same fear and horror you did when the event took place. Telling and retelling the story of your pain may have a similar effect. The event that caused your injury may have indeed been quite traumatic, but the cumulative memory of how the pain has ruined your life can magnify the effect of the trauma.
Avoiding situations that remind you of the event means that you may try to avoid situations or people that trigger memories of the traumatic event. For people with pain, this may show up as avoidance of situations that seem similar to situations in the past that were associated with feeling pain. People with PTSD often avoid talking or thinking about the original event. People with pain often feel they have no choice except to tell their story, and thus force upon themselves a fresh memory of their pain.
Negative changes in beliefs and feelings clearly happen to people with chronic pain. The way you think about yourself and about others changes dramatically. Before, you were capable, now you are not. Before, you could do anything, now almost everything you do hurts. Your pain has changed your relationship to those that matter the most. You can sense their disappointment with your limitations, and it is all too easy to think they are disappointed with you.
You feel keyed up. On guard. You are always alert and on the lookout for danger – for that wrong step or that jostle from a careless passerby that might send a jolt of pain into your pain sensing system. You might notice that sometimes you suddenly become angry or irritable. This is known as hyperarousal and can lead to difficulty sleeping, trouble concentrating, and being easily startled.
Some studies show that at least fifty percent of those diagnosed with PTSD also have chronic pain. There are no statistics on how many of those with chronic pain also have PTSD, but in my experience, there are many similarities between the two conditions. And the telling and retelling of the story of your pain can keep the trauma alive. But you can change your story. You can focus on something other than your pain. But changing your story means giving something up. Letting go of your old story is an essential step in writing a new story.
You should know by now that most people will never listen to your old story anyway. They simply don’t care. No matter how much effort you put into your story, how often you refine it and polish it, they still don’t really believe you are as limited as you are. You’re always going to feel, on some level, that they think your making at least part of it sound just a little too dramatic in order to get something from them. So stop.
Stop telling your old story. And start writing a new one. A story not about what you cannot do, but about what you can. A story not about who you used to be, but instead about who you are now and who you are going to be. A story not about what you have lost, but about what your new goals and desires are.
I would love to help you change your story. I want to be a part of your new story. If you want it, I can help you write it.