An open letter to anyone who has a chronic pain patient in his or her life.
If you are reading this, someone close to you lives with and suffers from chronic pain.
Since pain is invisible, many find it hard to believe that anyone could really hurt that much all the time. Unfortunately, this is one of the main reasons that chronic pain is so often misunderstood and under-treated. Chronic pain may be the result of an injury, disease or condition; but regardless the source, it devastates the life it touches. Even relatively mild pain, when it is unrelenting, reduces a person's ability to concentrate, perform daily tasks, work, socialize, exercise and sleep. The more severe the pain, the more incapacitating it can be. Chronic pain often leads to depression, isolation and loss of self-esteem. Sadly, people with poorly controlled chronic pain are also at increased risk for suicide.
There are three main things someone with chronic pain needs you to understand:
1. What they are feeling and experiencing.
If you're having a difficult time imagining what it must be like to live with constant pain, I'd like to challenge you to try an experiment. Take a wooden clothespin – the kind with the spring that works by pinching one end together and clamping the other end to the clothesline– only instead of attaching it to a clothesline, clamp it to the end of one of your fingers. Now go about your business and see how long you can leave it on. While you still have the clothespin attached to your finger, try to imagine how it would feel if you knew you couldn't take it off when the pain got to be too much.
What would it be like to have that non-stop pain in other parts of your body as well?
Next, imagine that the pain doesn't just continue for a day, or a week, or even a month, but goes on for year after year with little hope that it will end. If you can imagine that, then you have a small inkling of what your loved one lives with each and every day.
2. Their medical care and medication needs.
If you were able to imagine how people in chronic pain feel from the above experiment, can you also imagine how desperate they must sometimes be to find some kind of medication or medical treatment that will give them at least a few hours of pain relief? In a 1999 survey conducted by the American Pain Society, more than 40 percent of chronic pain patients reported being unable to find adequate pain relief.
Their frustration exists on two levels. First, it's difficult to find a doctor who can effectively treat pain because most physicians only receive one hour of training in pain management in medical school. On top of that, federal regulations surrounding the prescribing and use of the opioid pain medications often needed to treat chronic pain are such that many doctors would rather not prescribe any at all than risk being arrested because a couple of their patients abused them.
Secondly, even when patients are finally able to find a doctor who will prescribe the medications they need, their families and friends sometimes accuse them of being addicted and pressure them to quit taking their medication. Given all we hear in the news about drug abuse, it's understandable that loved ones would be concerned. However, there is an important distinction between being addicted to a drug and being physically dependent on a mediation that provides just enough pain relief to enable the person to have some reasonable quality of life. If you are concerned about your loved one's medication use, I would like to encourage you to read Opioids: Addiction vs. Dependence before making any judgements.
3. What you can do.
The main thing your friend or family member needs from you is your understanding, support and encouragement. They know you can't take their pain away. They just want you to listen without judging them and let them know you care. Often people with chronic pain have told me that the emotional pain of having loved ones question the validity of their pain or accuse them of just being lazy or wanting drugs is, in many ways, worse than the physical pain they have to deal with. They already struggle with feelings of guilt because sometimes they can't “be there” for family and friends as much as they'd like to be. Try to reassure them that you care about them for who they are, not just what they can physically do for you.
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