Hey folks, if you are just tuning in, I am in the middle of a series called Explain Your Pain. So far, I have been laying out the framework for why and how we have conversations about our chronic pain. You can catch up on the first few posts below.
Post 1 – The Communication Dilemma
Today, I move forward from my introduction and lay out 10 conversations about chronic pain we need to have with family and friends. Be sure to come back for future posts in which I will elaborate on some guidelines for how to have each of those 10 conversations.
Some of us have close friends and family members who are not even aware of our chronic pain, or are at least unaware of its severity. For some of us, the first step towards having these conversations is to disclose the existence and nature of our chronic pain, explain our diagnosis, and describe the extent to which pain has affected our lives.
We need to clearly explain the disconnect between how we look and how we feel. In careful and honest words, we must convey that the severity of our pain cannot be perceived or judged based on our outward appearance of health.
The number one reason our healthy friends and family members do not understand what we are going through is because they are comparing our experience of chronic pain to their own past experiences of acute pain. We must clearly explain the difference between “acute” and “chronic” pain and incorporate these words into our regular vocabulary.
Chronic pain affects every area of our lives, and we have lost so much, from jobs to finances, from relationships to our sense of self. Our losses form the framework of our emotional pain and grief, but so often these seemingly peripheral issues go unseen by those around us.
5. “Allocating Resources is One of My Biggest Concerns”
Forefront on our mind is how we will allocate our unpredictable and limited resources to survive over the next days and weeks. When our family and friends understand the nature of our limited and ever-fluctuated resources, it will go a long way in preventing lost and strained friendships.
6. “Chronic Pain Makes Me Feel Guilty For Things That Aren’t My Fault”
Many individuals in chronic pain feel guilty for being sick, and our loved ones tend to either not understand why we feel guilty for something that is not our fault, or feed into our guilt by blaming us for what we cannot do. As we carefully explain the nature of our guilt, our loved ones can move towards words and actions that draw us out of false guilt instead of pushing us further in.
7. “My Chronic Pain Is More Than Physical (But This Doesn’t Mean I’m Crazy)”
Chronic pain will always affect our mental, emotional, and psychological health, but we are often scared to admit out of fear people that will think we are crazy or that our chronic pain is somatic. We must find the words to convey that we struggle with our mental health, but this does not mean we are crazy or hypochondriacs.
8. “I’m Not Angry At You, I’m Angry About My Pain”
The stress and strain of chronic pain can wear us down into angry, irritable, and grumpy people, lashing out at our loved ones in the midst of our pain, building rifts in our relationships. We are sorry and do not want things to be this way, but oftentimes do not know what to do.
9. “’I Believe You’ Is the Best Possible Way You Can Respond”
So often people do not know what to say to us when we are in pain. It is hard to know how to respond to unrelenting suffering that has few answers. We can help people know the best ways they can respond and listen.
10. “Here is How You Can Help Me”
We need practical help, but we struggle to ask for help and express the kinds of help we need. So often we remain silent out of guilt or shame, but asking for specific types of help will go a long way in building understanding.
What conversations about chronic pain do you think are important to have? Are there any topics that I missed that you think are especially important?