Living with chronic pain occasions the question, “How are you?” People often respond, “I’m fine, thank you,” because others don’t always want to hear or talk about it. This is also an honest answer, for what is true in the moment. However, behind this answer are a few things people who live with chronic pain have in common.
Chronic pain never goes away. It waxes and wanes; some days it is unbearable and other days it is manageable. It is unpredictable and different for everyone. It is hard to make and keep plans. Chronic illness and pain are very isolating. However, it means a lot to not be forgotten.
The same disease does not produce the same symptoms in everyone. People with the same disease have different symptoms and issues. Don’t assume that knowing someone with the same disease means you understand what it means for another person.
Fifty million Americans live with chronic pain. Of that, twenty million have high impact pain which limits their work and social life. This is just over twenty percent of the population. You know someone who lives with chronic pain.
People living with chronic pain do not want your sympathy or pity. What is needed is understanding and compassion. Please don’t say, “Tomorrow will be a better day,” because there is just as good a chance that tomorrow will be a worse day. Please don’t try to fix it or say just the “right thing.” Often people are uncomfortable with the changes that come in the life of a person with chronic illness. It is understandable. Know it is enough if you just express your care and compassion.
Fighting for needed health care is a part time job. Keeping track of medical billing, paying co-pays and bird dogging our dysfunctional health care system is a task that takes time most weeks.
Energy is a limited commodity. There are no reserves to “suck it up” and do the next thing. When energy is gone, it is gone and there is no more. Pain saps energy. Some days getting dressed and eating take all the energy there is.
Pain causes brain fog. Some days it is difficult to do just about anything except watch mindless reruns because following a story line in a book or having the energy to do something enjoyable is just not there.
A sense of humor is crucial for living through most days. Smart ass remarks and sarcasm can be a helpful coping mechanism. It helps to get through the day. It can also deflect unwanted pity and sympathy.
Most people who live with chronic illness and pain don’t look sick. Saying so is not helpful. It feels minimizing. Much chronic illness and pain is invisible. It is more helpful to say, “I’m glad you could be here today. Thanks for coming.” Or, “Thanks for making the effort; I know it isn’t always easy for you to get out.”
The accountability of close friends who inquire about self-care and well-being are helpful. Please don’t assume you are the person to challenge someone to live differently with their limitations. It’s a small circle and you know if you are in it. If you have to ask, you probably aren’t.
It’s not helpful to say, “I am praying you will get better and I’m sure you will.” Please don’t say, “There are so many others who are worse off.” Yes, it is true and no, it is hot helpful. Please don’t minimize chronic illness with global statements about it not being terminal. No, it’s not life threatening cancer; however, such comments undermine the very real limitations that are part of every day.
So, when you ask a person with chronic illness or pain how they are, and they say they are “fine.” They are. They are managing and coping as best they can with a host of things that are not visible to most people. They are enjoying life as best they can. Hopefully, they are also discovering a new richness to life that comes from being present to the moment even when the moment is not what they hoped for their life. They are as fine as they can be in the moment.