The Emotional Rollercoaster of Living with Chronic Pain

By Jeannette

There are many causes of chronic pain–an accident or injury, inflammatory or neurological condition–but no matter the cause, chronic pain impacts our emotions. There is an intersection between physical pain and emotional well being. It is important to discuss this interplay, as well as strategies to address these difficult emotions to improve quality of life.

When first being diagnosed with a chronic pain condition, one may experience feelings of denial. Thoughts may come to mind such as, “this can not be happening, to me!” or “I am to young for this to happen.” It is also common to begin bargaining: “I will do anything to only have this pain or illness go away.” The chase for the cure begins.

It is a fact that people with chronic pain are 3-4 times more likely to experience depression and anxiety. There may be feelings of sadness and loss surrounding roles they held as very important that can no longer be fulfilled in the same way. Things that brought a sense of purpose can no longer be achieved. There is a crisis of identity occurring. A change in goals must occur in order to meet the ideals they had set for themselves.

More often than not there is a great deal of anger and frustration. These feelings may be directed at oneself, regarding new limitations, or regarding expectations they feel can no longer met. These feelings may also be directed at others as resentments, regarding judgements placed on them due to their new limitations or changing goals and ambitions. The person with pain may feel they are stigmatized for having chronic pain. Finally, there is anger at the pain and the illness itself.

Eventually, the person with chronic pain comes to a point were they must re-evaluate who they are a person living with pain. What will their identity be with chronic pain in their life? Do they have the same ideals and purpose? How will they find goals they can achieve to fulfill that purpose? The person with pain hopefully begins to establish a new sense of purpose and find new roles that bring about a sense of self-worth. The question here is “where will I find my self-worth now that I live with chronic pain?”

Finally, the goal is to reach a place of acceptance. This word is tricky, how could anyone just simply accept living in misery and distress? But it is not about that. It is about accepting that we are, just for today, powerless over the fact that we have chronic pain. However, we are not powerless over our lives! We are not powerless over how we live our lives with chronic pain. We are not powerless over the ideals we choose, we are not powerless over how we chose to fulfill that ideal with pain, we are not powerless over our character. Chronic pain can not take everything from us.

I must remind you these feelings and stages are not linear, even when we re-evalute our lives and find acceptance, we will still get angry and sad all over again. Furthermore, it is not easy to learn to live again in a new and painful body. It takes time to redefine yourself and accept new goals, new ambitions, a new pace, new roles, to find what gives you purpose. For me, even when I was happy and at peace with my new identity, it took me a long time to drown out the noise of difficult people who were not okay with my “new normal.”

So how do we address the emotional impact of chronic pain? How do we work toward re-evaluation and acceptance? Well, there are approaches like Cognitive Behavioral Therapy (CBT) and Acceptance-Commitment Therapy. These tend to be more pain-focused. I want to discuss 6 Comfort Focused strategies.

The first strategy is “Noticing,” taking note of positive things or activities in our lives that we would want more of, despite pain. It could be more laughs, maybe more time cuddling your pets, more ways to help others, how can you accomplish or make more time for that? Then there may be something you want more of that your pain is limiting, can you find a way to adapt it or pace and do it sometimes? Another aspect of noticing is to make your pain concrete, form a relationship with your pain, what would your pain look like in a picture? If your pain had a name what would it be? We often talk about pain diaries, but also be a detective, take note and ask yourself, “If I had noticed the pain five minutes sooner, what could I have done, or changed etc?”

Next is the process of re-thinking, looking at dysfunctional thoughts or “stink’n think’n.” One common type of thought distortion is catastrophizing: “I can not handle this!” But the truth is if you are still here you have handled it 100% of the time. All-or nothing thinking is another type of dysfunctional thought process, such as waking up and immediately telling yourself “Today is going to be a bad day.” However, the truth is we don’t have a crystal ball and we are not God, so we do not know it is definitely going to be a bad day. We just know we don’t feel good or are in a flare at the moment.

Finally, over-generalizing is a common thought distortion; one might say, “My pain is at a level 10 everyday.” It is true you might be among the 23 million that have daily and persistent pain, however, most people will thankfully never experience consistent level 10 pain. The pain scale likens level 10 pain to amputation without anesthesia.

Enjoying is another part of the process. Asking “how can I enjoy or at least appreciate just this moment?” It is also important to counter negative thoughts with positive thoughts and develop your personal emotional antidotes. It is important as much as possible to increase positive and helpful feelings. It may be useful to start a gratitude journal, focusing on what there is to be thankful for or a “good stuff” journal to note the happy moments and positive aspects of life. It is beneficial to start finding positive people to interact with, people that respect your new normal and your journey.

It is often easy to isolate when dealing with life with chronic pain. Relationships can be difficult enough without chronic pain. It is so important to increase social contact with understanding and like-minded people. Isolation only serves to foster feelings of sadness. We are always going to continue to run into difficult people along our journey. It is also important to practice assertiveness training skills and active listening for addressing difficult people.

As a person with daily chronic pain due to chronic migraine and a systemic connective tissue disorder, affecting various systems of my body, it took me years to process these emotions. As I said before, this is not a linear process. However now, the time spent not only in daily physical pain, but emotional distress is much shorter. Waking up to pain, at different levels every morning, ever-changing throughout the day and having to have a relationship with it is very difficult. I can only do it day by day, just for today, I accept I have chronic pain. Sometimes even moment by moment I have to choose, I will not resign my whole life to chronic pain.

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