By Ed Coghlan
Since we founded the National Pain Report, we’ve met a number of people whose loved ones suffer from chronic pain and advocate for them and the millions of others. One of them is retired pharmacist Steve Ariens. He agreed to share his thoughts about being a loved one and how it has inspired his advocacy. Here’s our interview:
1. It’s plain that your wife has inspired much of your advocacy work–take a moment to briefly explain her condition.
Barb’s health issues are your basic Fibromyalgia (FM), Chronic fatigue, Degenerative Disk Disease and many of the other issues associated with FM. We started dating in the Fall of 1965 – she can probably tell you the exact date, but it is a date that I can no longer recall. At that point in time, FM was an unknown disease, pts (generally 90% women) with FM were labeled as having “whining woman’s disease”. No medical testing would show anything abnormal. Because she had had Rheumatic Fever as a kid, it was a common belief that the majority – particularly females, would end up with Rheumatoid Arthritis at some point in time. She was able to “forecast” that the weather was about to change because of the “aches/pains” that she would experience at times.
2. Why did you feel you had to get involved in the way you have? (might merge 2 and 3 based on your answer)
Because we had our own independent pharmacy, I didn’t have to march to “the beat” to some corporation’s policies and procedures. For some reason, I have always had a knack for dealing with chronic pain pts. Because of my education, degree, licensure, dealing with chronic pain nearly constantly, both in my professional life and personal life. There is no separation in my life… I have always been an advocate for the “under dog” and my actions/reactions are almost autonomic.
3. Why do you think the pain advocacy efforts are so fractured?
The typical chronic pain pt. is physically, mentally/emotionally, financially exhausted/bankrupt. There was a recent survey that stated that 90% of the families that has a chronic pain pt. that the family was financially struggling. Because one spouse can’t work and the cost of treating the disease/chronic pain. If there is still a spouse around, they are often required to do the tasks of both spouses. If there is no spouse, then the chronic painer has to “live” on the meager sum of dollars and services provided by Medicare/Medicaid… If they can find a prescriber that will accept them and adequately treat their pain. “daily life” is a constant … all consuming… struggle.
4. Other than the CDC Guideline (which you have argued punishes pain patients), what is the most important issue that faces the pain community?
The CDC guidelines is just one example of laws/rules/regulations that – IMO – are unconstitutional. This is the area where the fractured chronic pain community can come together. It would take but a handful of advocates to create a non-profit whose sole goal was to collect contributions from the chronic pain community and their supports to create a “legal war chest” to fund such constitutionality challenges to those laws that attorneys believe need to be challenged. For every 1% of the chronic pain community that contributes the cost of fast food meal ($5 – $7.50) – ONE TIME – could raise 5-7 million dollars. Get them to contribute that amount monthly and a BILLION + dollar war chest is quite possible. Doing a constitutionality challenge would not take any participation by chronic painers. Right now it has been reported that no attorney will take on a legal case on contingency basis because under our legal system…. someone who is disabled, unemployed, elderly… their “life” does not have enough “value” to be worth their time to take the case on. If the chronic pain community sent out a RFP (request for proposal) to some quality law firms… stating the goal and the size of our “financial war chest”. they will be beating a path to our door. Of course, if those in the chronic pain community continue to be completely “passive pain warriors” then there is NO HOPE for changing the path that the chronic painers are on. We are a country of laws.. and sometimes JUSTICE only comes to those who can afford to hire attorneys to defend their rights.
5. What advice would you give other loved ones of those living in chronic pain?
There are no “typical/normal days”.. each day .. what other couples consider a “average day”… could be your “exceptional day”. You need to understand that plans are often cancelled. no sense of getting upset… because that is the way things are going to be. The spouse needs to be the pt’s advocate… doesn’t matter if it is at the doctor’s office, the pharmacy counter, with the insurance company, and others.. The chronic painer is typically fatigued and may have a “faulty” thought process because of the distraction of the pain. Many tend to be passive and/or not up to a “fight” to defend their rights. The reality of it all is that a passive pt. has poor health outcomes. Pt. may not always be right… but.. they always HAVE RIGHTS.
Some diseases are pretty easy to understand.. a pt. with a back full of hardware is going to have pain… Those with FM is not going to be the same as those with Multiple Sclerosis or other disease states that have pain associated with them. The more the spouse knows about the complex issues of a disease, will be helpful in dealing with the issues that come up.
Bottom line is to be supportive however you can and expect the unexpected.
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