By Suzanne Stewart
Being a Health advocate/activist” for people like myself, who live with chronic pain; is becoming more of a challenge. I’m feeling both proactive and protective. I want to help change the way society and the government thinks about chronic pain and the persons living with the daily struggles from it. I also want to help put a more positive spin on something that is very difficult to stay positive about. While Governor Chris Christie is becoming the “drug Czar”; he is talking about changing many lives in a negative way. Our President is putting persons in charge of what he has only heard of as “the Opioid Epidemic”. He listens to what others tell him and he reads about statistics or numbers of deaths; not the number of “people who have died”. Those are people who have passed away not numbers on a screen. These people each have or had their own story to tell and nobody was listening. I’m trying to get someone to listen to us. As a chronic pain patient myself, I can say that we feel like the rules of the “game” are being changed, without talking to any of the real players. When you only are only told one side of a story over and over again; you are not going to get the whole truth or the entire story. When the President or the Governor talks with people who have lost someone that they love due to a “drug overdose”; then that is the way the story is going to spin. There are journalists who have lost someone they love, to a drug overdose and they are writing over and over again about the “horrors of the Opioid epidemic”. There are reporters who are speaking against Opioids on the Television and producers making short films about “The Oxycontin Express”. I can only say that if I was misinformed and heartbroken, that I might do the same thing. But I’m not misinformed and I honestly feel that if I lost someone to an overdose, I would still try not to hurt anyone else while I was in mourning. I wouldn’t try to “punish the whole class for the behavior of one”. I would not want to go on a mission to try and “save everyone else” (while hurting so many and possibly not even knowing) to make myself feel better.
I turned on the TV the other night and one of the news stations had a week long special about “the Opioid Epidemic”. I was yelling at the screen and telling them that they hadn’t a clue! The person they had on as a guest, was someone who had broken his leg, had surgery and had become an Opioid addict! That is not the same thing as someone living with daily chronic pain and knowing that life will always be this way. Persons like me who live with chronic pain day in and day out, do need to try physical therapy, and other first choice treatments available. We realize that we need to give different options a chance. But when a patient with several high pain illnesses has tried many alternatives; and is not a candidate for other options; then they/we need reassurance. We need to know that the medications that many of us have taken for several years and that give some semblance of a life; are going to remain available and nobody will rip the rug out from under us!
I am in a group of people called “chronic pain patients”. We are not drug addicts! The definition of an addict, according to the Dictionary (on Definitions.com) is this: “to devote or surrender oneself to something habitually or obsessively”. I can speak for myself and the hundreds of chronic pain support group members that I mentor. We take only the medications prescribed to us by our physicians and/or Pain Management Physicians. To clarify, I will explain further the difference between the addict and the pain patient. The majority of chronic pain patients take their prescription pain medications (or Opioids) responsibly. The medications for pain are taken per the instructions of a legitimate pain management physician or well known doctor. Long time pain patients continue on a steady dose of pain medications and do not crave more than that. In fact, the truth is that just about all chronic pain patients, myself included, don’t want to be on the medications that we are taking. On the other hand, an addict has thoughts about their medications/drugs constantly and overwhelmingly. They can’t function because they’re thinking about their next dose all day long.
I read an article awhile back called “The Word is Credibility-Not Stigma-in the Prescription Opioid/Heroin Epidemic”; that really hit a nerve with me. It upset me because the writer puts down the responsible chronic pain patients and “lumps” us together in the same category as heroin addicts. She wrote about the deaths of people who have overdosed. But how many of those deaths were people who took only their prescribed dosage of pain medications? I read another article in which the writer (*Denise Molohon, a guest columnist for PNN January-2016)) stated that “the CDC even admits to giving out skewed data”. The CDC has qualifiers for their “Morbidity and Mortality weekly report. She researched the information that she was given and found that those qualifiers are as follows:
- “approximately 1/5 of drug overdose deaths lack information on the specific drugs involved. Some of these deaths might involve opioids.”
- “Heroin deaths might be misclassified as morphine because morphine and heroin are metabolized similarly, which might result in an underreporting of heroin overdose deaths”
The writer also stated that “if heroin deaths are being misclassified as morphine, which results in the “underreporting” of heroin overdose deaths, then wouldn’t the opposite also be true? That there is “over-reporting” of morphine deaths, which are then misclassified as prescription Opioid deaths?” Also, when we are reading or hearing reports about fentanyl overdose deaths; most of those deaths are from street drugs fentanyl and not the prescription pain medication. We just can’t lump medications and street drugs together, that is irresponsible. Only “5% of people who are prescribed Opioid pain medications, go on to become addicted”, according to our own National Pain Report in November 2015. As a legitimate chronic pain patient, I can verify that we only take pain medications to be relieved of horrible daily chronic pain, nerve pain and the pain from such illnesses as CRPS plus many others. We don’t become “addicted” to our prescription pain medications. Our bodies may become tolerant or “dependent”, but we are not addicts.
There are support systems such as the U.S. Pain Foundation and RSDSA who encourage the chronic pain patients to not be hopeless. They empower us and encourage us to do whatever we can do but never more than that. We have a voice and it needs to be heard. Anyone who hasn’t experienced chronic pain first hand or even as a caregiver, hasn’t any idea what it’s like to be in horrible pain 24/7/365. When you are finally given something to alleviate that pain somewhat (but never 100%), it is a relief. But then because of the people or groups who are working very hard to take our pain medications away, we become fearful each month that goes by. We fear that one method that helps us to get out of bed each morning without writhing in pain, crying and screaming out in horrible nerve pain; could be taken away at any moment.
I feel that people who are doing this are doing it for the wrong reasons. People need to be educated regarding Opioids instead of being afraid of them. There are some chronic pain patients who are not candidates for other types of pain control, such as the pain pump or the spinal cord stimulater (SCS). Taking a medication away that helps so many pain patients to just put their feet on the ground in the morning, seems cruel. Hurting someone because you have felt “wronged”, is just terrible. There needs to be some kind of shelter from the world of intolerance.
Suzanne has lived with a Systemic CRPS & several other chronic pain illnesses since a MVA in 2002. Prior to being disabled from chronic pain, she was an Interpreter for the Deaf at a hospital & worked with Deaf children. Since 2005, Suzanne’s been a patient Health advocate, support group leader & Mentor. She continues doing these things today, but also does public speaking, awareness events and she’s a Writer/blogger & an Ambassador for the U.S.Pain Foundation.
For entertainment she creates advocacy videos & uplifting ASL cover song videos on You tube and she writes in her own blog Tears Of Truth (Suzydukettes.wordpress.com).