The definition of chronic pain is straightforward: pain that is refractory and lasts longer than three months. This is the medically accepted definition of a physical process that involves pain signals traveling to receptors in the brain that then produce the sensation of pain. But what does pain feel like, actually?
What does pain feel like, especially chronic pain?
Those struggling with chronic pain might have a very easy time with the physical description of pain. It might be a stabbing pain or a constant low hum of throbbing sensation in the muscles, joints, or all over.
Pain is not just a physical sensation, however, and answering the question what does pain feel like and how it affects life to someone who has no experience with chronic pain can seem impossible. Chronic pain is so much more than a physical sensation. Those who experience it struggle with mental and emotional side effects that can be difficult to explain and even harder for others to comprehend.
The first part of answering the question “What does pain feel like?” starts with the chronic pain patient even being able to muster the energy to explain, again, why plans get cancelled or they slept all day.
What does pain feel like everyday?
Liv, a yoga teacher in Baltimore, is frustrated even before she begins to tell her friends about her pain:
“[Chronic pain is] isolating and frustrating. Often times I cancel plans with you because I’m exhausted. If I told the truth most of my friends wouldn’t understand. It’s hard when you ‘look fine’ and often times I know it can be hard for people to understand what is happening.”
This has nothing to do with the quality of a pain patient’s friends. Even the most loving and supportive people have a hard time understanding how someone who is seemingly successful and looks okay can actually be exhausted and in pain.
Julie Ryan of Counting My Spoons puts it very simply: “No gets it until they get it.” She believes that it is impossible for people with no personal experience of chronic pain to understand or truly empathize with those who suffer. She refers to chronic pain as being in a hole, and points out that having been in the hole is a crucial part of understanding what it’s like:
“It’s not that the people who aren’t in the hole can’t offer us help (and a sandwich) but because they are not in the hole with us, they don’t really understand what it is that we need.”
Using the hashtag “#spoonie” and “#chroniclife” on Twitter, many chronic pain patients are sharing how pain feels every day.
From getting out of bed to just taking a shower, chronic pain makes everything harder.
The uncertainty of what each day will bring can be one of the hardest parts of chronic pain, says @congainuocngaoi:
Not knowing how my legs are going to react to hitting the floor ev morning makes it v hard to get out of bed #chroniclife
— R Nguyen (@congainuocngaoi) March 31, 2016
Jen (@paper_mermaid) discusses the physical realities of the simplest tasks of self-care, including just bathing:
— Jen Miller (@paper_mermaid) March 28, 2016
For those without chronic pain, these two tweets can be difficult to understand. Those without pain take daily tasks for granted, but those experiencing chronic pain know that just standing up can be exhausting, especially after a terrible night of sleep. Because those with chronic pain often experience sleep disorders, fatigue and exhaustion can be the rule, rather than the exception, making any task that much harder.
One of the most frustrating parts of this exhaustion is how inexplicable it is to others, as Liv points out: “When I do everything everyone says I need to in order to feel better and feel terrible anyway, what’s left? Like sleep for 9 hours and for no reason need to lay down at 5pm? Nothing like waking up after a good night’s sleep every morning feeling like you were out [all night].”
During a recent deposition I had to talk about my illness. It was very emotional. How do you explain brainfog to a non spoonie? #chroniclife
— Chronic Donut (@77Rdub) March 31, 2016
What does pain feel like with mood disorders?
Chronic pain patients are more likely to suffer from depression and anxiety than other people. These two conditions are also “invisible” illnesses that are stigmatized as being something that should not be discussed. The fact is, though, that not discussing the mental and emotional side of how pain feels only adds to the problem.
Suffering from depression can amplify every feeling of isolation and doubt that a person in chronic pain is feeling. There is new evidence that inflammation in the brain can be a primary cause of depression. Added to previous evidence of how prevalent depression is for chronic pain patients, these new findings further prove that chronic pain has roots that go much deeper than physical sensation.
For those who love a chronic pain patient, the most important thing to know is that they are trying, every day, and they want to do more. Their pain does not make them want to do less; it just makes doing everything ten times harder. Even if you have never been “in the hole,” persistence and patience are key ways to support your loved ones.
Liv offers a final piece of advice on how to support a friend with chronic pain:
“If you have a friend with a chronic illness, it can be a challenge. But, keep at it, try to understand, and know that person often just needs your support/understanding and not your judgements or advice.”
If you have chronic pain, what is one piece of advice you would give to your family and friends to help them understand what you are going through?