Pain and the Honest Truth

Pain sufferers will be able to relate to this post: it is about pain so terrible that every thought you have makes you feel like vomiting. The sound of the wind in the trees, through a window, is excruciating. Every image that comes to mind is so sickening you want to die. You think–to the extent that you can think at all–about how best to kill yourself and make the least possible mess in the house. 

Pain is a terrible thing and so misunderstood by those who have never really experienced it or have only experienced acute pain. We pain suffers are big liars. We tell our loved ones that it is not so bad, because we can’t stand the thought of being forced out of our beds to go to the hospital. The idea of the trip there is beyond acceptable. We would rather lie in the dark and suffer than get our heads around the notion that someone somewhere–such as a doctor at a hospital–could help us live through the next few hours.

Oh, yes, we have medications at home. We take them all–risking serious consequences–in an attempt to make the pain subside. We nibble on saltines because the medicine is supposed to be taken with food, but all food is so nauseating to our minds that we can hardly bear the nibbling we must do on these three crackers we have set out as our goal.

People stop in, such as our children, to give us some interesting bit of news, like my daughter last night who was heading out with friends to celebrate her 16th birthday, and they see us with our head literally in our hands, wrapped in blindfolds left over from airline flights where they give out the eyecovers so you can sleep on the flight. Pain suffers save these items, because you need at least two or three to completely block out all the light, even at night, that is somehow shining through the darkness and making your head throb that much worse.

Headaches are not the only kind of chronic pain, but they are one of the kinds that I get. As a pain sufferer, however, I do have other kinds of pain. I even have pain preferences. I would much rather have the unexplained pain that I sometimes get in my teeth–all of them– than a headache. Where does this mouth pain come from? It is a mystery. I do not grind my teeth, I have never had a cavity. My teeth are in perfect condition, but they can suddenly become the source of amazing pain that requires opioid based therapeutics. Or there is the creepy, crawly, pain that I sometimes get in my legs. No amount of rubbing or wringing can make the pain go away. I lay there longing for cramps, because they are preferable to the horror of the creepy crawly pain.

Why this blog–well, other than venting, to attempt to describe for you, the non-pain sufferer, how we feel. To help you understand why we must be allowed to have pain medications in our homes without the fear that others will steal it (or “borrow” it). This mis-use of our much needed medicine gives us a bad name, it gets us strange looks from pharmacists–who are otherwise pretty nice people but who look and scrutinize those of us who regularly obtain controlled substances like we are some kind of addicts. STOP looking at us like this. We are merely trying to be prepared for the next episode. Furthermore, we never know when it will come. True, some of us have triggers. Frankly, I feel sorry for those people because they must bear the added burden of knowing that they sometimes make choices, like participating in a toast at a party (yes, just one sip of alcohol) that will later result in their secret desire to die.

If you are the loved one of someone with chronic pain, God bless you. Thank you for checking on us every twenty minutes–quietly slipping into the dark room to see if we need anything, to check if the pain has subsided at all and to sigh when you notice that we have finally fallen into sleep. God bless you all.

Smart people outside the beltway

One advantage of working in health policy and its research is the opportunity, on occasion, to do focus group research around the country. This week I traveled to Richmond, VA and Philly, PA to conduct focus groups with people who had had surgery in the past three years. Not to worry, this blog is not about surgery. What it is about is how smart the average American is and how resilient and reflective they are behaving at this particular moment in our country’s crisis.

When we recruit, or any research company recruits, for focus groups to gather opinion data from Americans it is important to get a good cross-section of people. It is not unusual to see people with incomes between $25,000 and $50,000 for a household, often with this income representing two individuals. The really interesting thing is that this means nothing about how very smart and insightful Americans are, no matter their current earning power. People remain involved in their communities, leading Cub Scout and Girl Scout troops, coaching soccer, taking kids to early morning swim practice AND they are engaged in what is happening in this country.

Despite their consistency with respect to maintaining their lives—and in the case of most of these people—in the face of chronic illnesses—they have such valuable insights into all sorts of issues affecting our country. Basically, they understand the healthcare crisis, know that reform is coming and really want to know how American’s health insurers will perform, as players, in the reform. They are satisfied with their insurance, when they have it, and are empathic with and for people less fortunate than themselves. They are interested in entering a dialogue about how to improve other people’s access to the good quality healthcare, like they received when they had their surgeries or surgery.

Another interesting thing about American’s is their understanding of the need for the health care system to appropriately market itself. During focus groups we often ask them, near the end of a two-hour session, to write their own statement of how they would sell the particular service or product that has been discussed to others that they know and care about—their friends and family. Folks do an amazing job in articulating themselves and the concepts that make up the healthcare system, as well as a great job in wording statements about how healthcare should be ‘sold’ or marketed to the average American. Take heart. American are clever, innovative people. They are engaged in the current situation and see hope on the horizon. They want to be part of the solution and have an underlying belief that things are going to get better within the next year—following some very difficult months.

Good for them. Good for us, good for the U.S. We are on the right track, as long as we keep these great folks in the mix going forward.