Let's Chat about Chronic Pain Patients and Discrimination

 When I say discrimination, I'm not only talking about the discrimination that Chronic Pain Patients face in society, but also what they face within the medical community.  From hospitals, to emergency rooms to pharmacies at one time or another, a chronic pain patient is going to feel the sting.  It's something I know all too well and I'm NOT a chronic pain patient. I deal with two every day. My Mother and my son.

The latest in point: my mother is currently in the hospital. Mom was hurt when I was a teenager on the job. As a nurses aid, a patient twisted her arm two different ways, in order to get away without hurting the patient, she twisted it a third resulting in permanent Ulnar Nerve damage in her left arm. Her main arm. She's had multiple surgeries on the nerve from scar tissue to moving it into a fatty deposit on the other side. It's been thirty years. In those thirty years, never once has she abused her pain medications. She's never taken more than prescribed although I have watched her in tears with the pain, she has never "lost" a prescription. She has never gone to other emergency rooms looking for more medication.

Last month, right before Christmas, her doctor caved to pressure from the insurance company and dropped her due to being readmitted to the hospital multiple times. On top of chronic pain, Mom also has COPD, Congestive Heart Failure (CHF), is prone to cellulitis in her legs from the swelling of CHF and a list as long as my arm of other issues. She's in the hospital a lot. She was asked today, by a doctor in the hospital she always goes to, if she was dropped for abusing her medications. Yes she's on a high dose of narcotic medication, it was prescribed by the doctor who dropped her. If Mom was a drug seeker, it would be in her chart. She has home health nurses coming in about twice a week. If they thought she was abusing her meds, they would do a pill count at every visit. They could have if they so chose to. There was never an issue. But instead of calling the doctor to find out the reason, the doctor caring for mom immediately leaped to medication abuse.

Shortly after Jamey turned eighteen, he was suffering from a major pain flair which caused the pain clinic to raise his dosage three times in a month. For some reason, the pain clinic never contacted the pharmacy about the change and since his medication is compounded, it was taking some time to make as well as insurance issues with the new dosage (preauthorization) He was going to run out. Our regular doctor was out of town, the two nurse practitioners do not have admission authority and  since the on call doctor did not agree with the pain protocol Jamey is on,  She would do nothing. I took him to the ER. Without even reading his chart, the emergency room doctor flat out told me that they would not give him his prescribed medication that he had gotten there several times by IV (and we were requesting admission for IV infusion) In fact, they told us that the hospital did not do IV transfusions of the medication.

Let's just say, I rose a bit of a stink that night. First off, the doctor admitted to just scanning his chart. If he had read his chart, he would have learned that Jamey is a liver patient (before cirrhosis was diagnosed) We were told to give him tylenol which is against his doctors orders because tylenol is liver toxic. When I brought that to his attention, he said to give him ibuprofen which is an NSAID. Jamey was already on an NSAID through rheumatology. It could have caused bleeding and stomach issues. It ended in a shouting match in the waiting room of Children's hospital where I told them that I would be back with a lawyer and the media (didn't happen, I was just really really angry after watching my child walk out of the ER in tears from the pain.) I wonder how many other families have been treated the same way? It was horrible. He spent the next four days in bed until we could get the new dosage of his medication.

And now, even when I take my youngest son in, they make sure to let me know that they have fully read their charts.

I have been blessed not to run into the biggest discrimination at pharmacies where they will refuse to fill a chronic pain patients prescriptions. I came close with his newest medication, the tech was a bit snooty until I told her that it was used for chronic pain, head aches, to increase the appetites in end stage patients, and for nausea associated with chemotherapy. Fortunately for her, her attitude changed, because I would have had no issue at all going to the manager of the store as well as to the head pharmacist.

Things people have told my mom or my son:

  1. It can't hurt THAT bad. (yes it can.)
  2. If you can do XYZ, why can't you do ABC? (Physical limitations. XYZ may be distraction techniques TAUGHT to the patient to deal, and yes some days or even some times of the days are better than others.) 
  3. You aren't handicapped. (If your doctor says you are handicapped, you are handicapped. It's not for you or I to decide.) 
  4. Push through the pain. (one of my favorites. Would you ask someone with a broken leg to walk on it? ) 
  5. He's/She's faking. (how in the world would you know that? Ask to see the medical records. They don't lie.) 
  6. Pain is weakness leaving the body (written on t shirts for the football team during Big Dog Bootcamp his junior year. After his gallbladder surgery. During his first pseudotumor cerebri diagnosis. My son is the strongest person I know.)
We don't ask people with cancer if they are faking. We don't expect someone with a torn ACL or other ligament to be back to normal activities before being released from a doctor. If we see a cast, we don't expect the person with a broken limb to be using it. But since pain is invisible and extremely variable, we expect far more from Chronic Pain Patients than they can give. And it's causing major issues. Depression, anxiety, suicide. The feeling of being worthless because if it's chronic, it's not going away anytime soon, if ever. It's a new way of life and for many it's hell on Earth. 

There are millions of chronic pain patients in the world today. Are you one? Have you seen discrimination first hand and would like to share? Is someone you love suffering every day? 



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I guess I'm actually supposed to fill this out. I'm a passionate medical mom of a 19 year old liver/CRPS patient. My goal with my blog is to raise awareness for his conditions. And to hash out my feelings about it. There are a lot of raw emotions when your life is suddenly stalled by any illness, let alone your child's illness. 

I'm also attempting to either "find myself" or "remake myself". So much of my time and energy goes into caring for both my mother (end stage COPD) and son, along with trying to be Mom to my younger son and a wife, that most of the time I feel lost. I tend to put myself on a back burner and right now I'm burning out. 

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