Says Who??

Verstehen, through shared perspectives

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“Me, too!”  We can all find ways to join with others who share the significant abuse, pain, loneliness, poverty…..whatever has touched us with enough significance to change the way we conduct our lives.  Our thoughts.  Our treatment of others.  Our understanding of our own worthiness, or the lack thereof.  The reality of our life that will either make us, or break us, through no fault of our own.  For over 100 million people in America, that reality is ongoing.  For some it has just begun, for others it has been the story of a lifetime of pain, and of trying to cope.  These are the chronic pain patients, and I am here to say, “Me, too.”

Elsewhere on this website I have talked about the devastating pain, and the 45-plus years I have lived with it.  About how I could not take pain medications other than NSAIDs, which ultimately caused more problems to be dealt with.  About how almost 4 years ago I went to a Pain Management physician, who made it possible for me to return from the nights spent crying in pain and helplessness, wishing for death, to a productive life once again.  Yes, along with many who have committed suicide or considered it since the War on Physicians and Pain Patients, I can say “Me, too.”  Although I cannot consider suicide (and this is no credit to me,  it is just a fact), I have certainly prayed for death to take me out of the intolerable situation.  As I said, I have written about this before.  It’s all still on line, if you need to read it.

But that is not why I write now.  There is a deeper reality to being a chronic pain patient in America, one that is emotional and psychological, and causes a pain of the inner being that is every bit as devastating as a pain level of 10 on a scale of 1 to 10.  It is why the title of this piece is “Just Another Chronic Pain Patient.”

To our government, to many insurance companies, to law enforcement and even to some medical associations and physicians, nurses and practitioners, and even to our own employers, our families, our churches and our friends, we do not exist.  When we must leave the house, we dress as well as possible, use makeup, and try to appear as though nothing is wrong with us because no one wants to hear or be reminded about our constant struggle.  It isn’t a welcome contribution to our daily interactions.  Worse, we often hear:

It’s all in your head.  See a therapist, not a doctor.

You would feel better if you would just get out and do more; exercise more; volunteer more.

Quit feeling sorry for yourself and look around you.  You are better off than most people.

If it wasn’t for you and your kind, we would not have this opioid crisis.  It all began with you drug seekers.

And these are only a few of the arrows that pierce our very souls.  Like when we are not even mentioned in discussions of how pain medication should be used.  It is all about the people with substance abuse problems, or acute, short-term pain.  These are considered legitimate issues, worthy of concern and assistance.  And they certainly are all of that, but Chronic pain does not exist, is not even worthy of notice.

Nothing is said about the courage and strength of the single mom with children to support, who bravely goes to work every day looking her best, with a big smile on her face, hiding the pain that racks her body to the point that she cannot eat properly, or sleep well at night.  And she won’t talk about it, because she knows she could lose her job, or her children, or the medications a concerned and knowledgeable physician gives her so that she can go to work and care for her children.  She lives with the fear, as well as the pain.  Every day.

Speaking of every day, other patients are condemned because they may have periods of hours or even days of less pain, when they can get a lot done, and enjoy some time free of the pain.  Those times come at a high price:  when they can no longer operate at that level of freedom, they are under suspicion of malingering.  “S/he only hurts when it suits her/him.  They just want attention/pills/time off from work..” Whatever character flaw the speaker is convinced the pain patient suffers from becomes a reality for the speaker, and the consequences of their words become, by extension, a reality for the pain patient and the source of increased feelings of worthlessness, even evil. Oh, the word evil is not spoken.  But add up all the negativity, the character flaws identified by those who have little compassion to spare for the pain patient, and to the pain patient, it feels as though others see you as something evil, at worst.  Maybe only as something unworthy of compassion and a helping hand, at best.

Is it any wonder that some of us have not been able to continue living in the face of having medications taken from us, on top of the horrible feelings engendered by knowing what society thinks of us?  Is it any wonder that not many have been able to speak out and say “Me, too?”

No, I am not asking for credit for doing this.  I am just praying that if you know a chronic pain patient that you will give a second thought about the stereotypical comments that come to mind.  I don’t presume to say that all patients feel the same way that I feel, or to the same degree.  But the same thing is true about chronic pain.  Our lives are different, and we cope the best we can with the degree of pain and rejection that we suffer.  To that, we can all say “Me, too.”

In truth, there is no such thing as “Just another chronic pain patient.” 











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clothing label 4Remember when the labels in our shirts used to scratch and irritate the skin on the back of our necks? It’s not so bad, any more, since they began stamping the labels into the material. Labels are now not only part of the garments that we wear, but they are also indelible and unlikely to wear off for the life of the garment.

Which got me thinking…..labels that are put on people, by other people, also may become an indelible part of who that person is allowed to be in our society. We are labeled with diseases (both physical and mental), with eccentricities of character, with our socioeconomic status, with our vocations, with family membership, and even by the region where we live. Labels fit easily into stereotypes, and stereotypes can lead to social disasters like racial profiling, as well as to the impossible expectations of success (Justin Bieber and Miley Cyrus, for example).

Labels, with their baggage of expectations, have burdened me my entire life, even as a child:

“You have a heart disease, so you can’t……”

“You are the preacher’s daughter, so you can’t…..”

“You are the preacher’s daughter, so you must…..

“You are a woman, so you can’t….

Enough. You get the picture. Everyone wants to put me in a box with a label that they understand, so that they know what to expect from me, and what to keep from me. Some people can become quite ferocious when I don’t stay in that box. Nevertheless, I developed an aversion to being told either that I could not do something, or that I had to do it. My knee-jerk reaction has inevitably been “Yes, I can” to the first, and “No, I don’t” to the second, even if it might not work in my own best interest to respond in this way. For example, that is how I wound up in South Africa in the middle of a revolution. Several misguided but well-meaning souls told me I couldn’t go there. (On the other hand, I am so glad that I did!).

Until recently, I thought I may have mellowed a bit – become more reasonable, perhaps even occasionally diplomatic. Then we entered an election year. I am pressured on all sides by the most vilifying arguments to commit to voting Democratic, to defeat the Republicans, or to vote Republican, to defeat the Democrats. A few years ago I realized that I had never voted a straight party ticket—either way—in my entire history of voting. I was not interested in the party the candidate belonged to; I wanted to know if they could do the job, and if putting them in office was in the best interests of the country, or the state, or the county/township. So I changed my voter registration to “Independent.” (Kind of fits me, if I have to wear a political label of some sort–at least, it is a label of my own choice).

So, getting back to labels, I am watching a country that is beginning to wear its political labels indelibly. The label is now an internalized part of the person’s identity, never to be mistaken for something that can, or should be, changed. This is not democracy, it is tribalism. In a democracy, you think and work for the best of the country. In a tribe, you can become a victim of the kind of groupthink that may feel so threatened that all other tribes must be demonized. Not only does our indelible group label define the very essence of our being at that point, it labels other groups as inferior, undesirable, and unnecessary; probably, eventually, as subhuman. Our lizard brain kicks in, seeing extermination of the enemy as a necessity. Think Ferguson.   Think Rwanda. Think Bosnia.

These events and the tribalism that drove them are definitely incompatible with our ideal of democracy—”One nation, under God” does not translate as “destroy everyone who fails to conform.” Dialogue and mutual respect are the tools of democracy. As a teacher, I learned that my effectiveness did not depend on my respect for all of the actions and ideas of my students. It did, however, depend on my respect for them as human beings, worthy of having the opportunity to speak their thoughts and be heard—to enter the conversation of life.

Loyalty to ideals, to the group we belong to, and to the planet we live on, can still be conducive to democratic process when we also hold to the ideals of inclusiveness and tolerance, and when we carefully monitor our own actions for signs of demonizing other human beings. No matter how much I may dislike someone’s actions or ideas, I am not compelled to dehumanize them in order to fight for the goals of my own group. I just need to make my own fight that much more worthy, and good, and appropriate for my country.

Vote, whatever you do. But vote for the best candidate to get the job done, not for the “group, whether right or wrong.”  Hint:  Look carefully for candidates who can win you over through who they are, rather than through their claims of who everyone else isn’t.   Labels are for clothes and grocery items, not for humans.