Chronic Pain Advocacy
It’s election season?! While the political landscape may seem tumultuous, it presents an opportunity for chronic pain patients like me to advocate for change. As leaders grapple with the complexities of the opioid crisis and its effects on our healthcare system, it’s crucial for them to understand the perspective of those of us who rely on opioids for pain management. To put it another way, we must share our patient stories as loudly and proudly with our leaders, the power of our stories will change minds.
While researching other lobbing attempts utilizing patient stories on social media, I encountered a template for a letter that, in my opinion, missed the mark by a large margin. Rather than demonizing leaders and demanding drastic actions with no probability of ever being successful, we must accept that our leaders are experts too, just with a different perspective than that of a patient. There is no such thing as a perfect public policy so It's essential for patients and policymakers to work together towards ideation that prioritizes patient well-being as best as we can instead of resulting to basic schoolyard name calling.
As a chronic pain patient, I rely on opioids to manage my pain effectively daily. Contrary to common misconceptions, opioids aren't meant to eliminate pain entirely but to make it more bearable, allowing me to maintain a decent quality of life. However, current policies often limit access to pain management treatment options, leaving many patients, including myself, struggling to find relief.
Working with this goal of prioritizing patient well-being, I created the following letter in the hopes it will help other chronic pain patients with their own lobbying efforts. It’s not a traditional fill in the blank type of template. Instead, I tried to use my patient story as an example in the hope of convincing all leaders that we patients are experts too and should be invited to the conversation about opioids as such. My goal was to create a model where other patients could simply insert their story into a similar format as my letter. Most importantly, it’s a hope for all of us to work together for a stronger system. Hope it helps!
Dear (Senator, Representative, Governor, etc),
My name is Alan and I’m a long-term chronic pain patient with multiple health issues. I’m writing to you today for 2 reasons. First, with the so called “opioid crisis” still front and center in the news I would like to take a moment and share my perspective as a patient in pain. Too often my perspective is lost in the opioid crisis discussion. Second, and as important, I would like to share my expertise on this subject in the hopes it better informs your job as a public policy expert. I’m sure you will agree, we all need to work together if we want to establish a truly patient or human centered healthcare system.
To begin with, I would like to explain to you what an opioid does for me as a chronic pain patient. As you know, most medication is designed to “control” or “cure” a disease. For example, I take Cartia to prevent blood clots, heart attacks, and strokes because of my atrial fibrillation. I also take Metformin to lower my blood sugar levels that are caused by type 2 diabetes. Opioids are not designed to prevent or even control my pain, their job is to make it more bearable, thus giving me more time to continue to work towards a decent quality of life.
Opioids have two time periods for which they create bearable moments. Depending on whose research you want to use, a short-term opioid can provide pain relief for anywhere between 3 – 5 hours while an extended-release opioid can provide up to 12 hours of relief. Due to the current political climate, many if not most doctors will only prescribe for short-term relief. Let’s say I’m awake for 16 hours a day (as most any patient will tell you 8 hours of good sleep is rare) but my doctor will only prescribe me up to 4 Oxycodone per day. If I only receive 3 hours of relief per pill, that means every day I have 4 hours of untreated pain while awake. That’s 28 hours a week of awake time for which I’m essentially chasing pain relief, even for an experienced and accomplished pain patient such as myself, that is almost impossible to recover from. We now have a politically charged care climate where my pain management is based more on people’s stigma towards opioids vs how chronic pain presents in my life. The result being I spend more time chasing my pain instead of working towards a decent quality of life. Obviously, this is not patient centered care.
From my perspective, extending the duration of opioid prescriptions could provide more consistent pain relief and better align with the nature of chronic pain conditions. Yet, fear of addiction often leads to overly cautious prescribing practices, leaving patients like me to endure unnecessary suffering. Opioids are not a front-line medication and should be prescribed with caution, but that caution can’t be based on the political opinions of groups who are trying to cash in (both financially and power) on the current climate surrounding these pills. Despite the social stigma of opioids, this medicine is still one of the best pain management tools available to me yet much of my treatment is founded in bad news coverage, non-profits seeking power and influence through manipulation, and late-night jokes from comedians on our tv’s.
To illustrate the daily challenges of being a chronic pain patient, let me paint you a picture of a typical day in my life. I share this with you in the hopes you can walk a few steps in my shoes as a long-term chronic pain patient.
Despite having rheumatoid arthritis, severe osteoarthritis, bilateral hip dysplasia among many other pain-based conditions, I’m going to illustrate what it is like living with my degenerative disk disease and the damage it has caused in my cervical spine. What I’m about to describe for you is an average or normal day in my life. By my definition, a true bad day of pain would most likely involve either the emergency room or a frantic call to my doctor for immediate help for whatever breakthrough pain I’m experiencing at that moment.
Currently, I have 8 screws and 2 plates in my neck with a high probability of more soon. According to my last x-ray, my neck has fused together from my C2 to C7 vertebra. If you are not familiar, think the point where your head and neck meet to the start of your back.
Due to my current neck damage, I have a very small margin of error between sleeping in a position that compliments the damage I have compared to waking up in moderate to severe pain because I slept in a bad position. It is not uncommon for me to wake up at 1 or 2am feeling nauseous or running to the bathroom due to a fear of being sick because the pain is so bad. When this happens, I will get out of bed to go downstairs so I can watch tv and ice my neck. It is important to leave my bedroom while in this much pain, so I don’t associate my bed with pain. I have not tracked this but I’m guessing the tv/ice pack strategy works about 50% of the time. If it doesn’t work, I’ll usually get up to make some form of breakfast so I can take my morning medicine. Occasionally I’ll take my meds without food when the pain is so bad because I don’t want to move but I run the risk of upsetting my stomach.
It is not uncommon for me to eat my breakfast with a second ice pack on due to the severity of my pain. I typically eat all my meals now while icing my neck. At around 6 to 7 am, hopefully this strategy has bought me enough relief so I can take a shower and plan the rest of my day. Like sleeping, the margin of error with my posture is also small. If my posture is not perfect, my pain levels will skyrocket during the day regardless of the activity or goal for the day.
I’m lucky, thanks to my parents I have inherited what many have described as a high pain tolerance. For example, Dad was once upset with himself because he took a baby aspirin for pain relating to his shingles. Since I do have this skill or ability, I try to use it to my advantage whenever I can. Often this means going to the grocery store, gym, or hiking even though my opioids are still working to catch up to my pain levels. Yes, this might be risky due to the levels of pain that I am in, but I find exercise or any type of distraction to be an excellent pain management tool too. In particular, the higher levels of cardio that I gain by continuing to exercise translates into higher pain tolerance capabilities. Also, the ability to continue to hike with my camera often provides an excellent, albeit temporary distraction from my neck pain. Like most pain patients, taking opioids is only a small part of an overall pain management plan that includes many facets. The trouble is I need all facets of my pain plan to work together to be successful, however, too often current policy towards opioids is making this harder and causing me more health issues. As a quick FYI, my medical team and I think my atrial fibrillation was mainly due to my high chronic pain levels.
Despite this challenging life, I remain resilient, relying on a combination of medication, exercise, and lifestyle adjustments to cope with my conditions. But I can't do it alone. I urge policymakers to include chronic pain patients in discussions about the opioid crisis and to consider our perspectives when shaping healthcare policies. I offer myself as both a chronic pain patient and an expert on the realities of living with constant pain. Together, we can work towards solutions that prioritize patient well-being and ensure access to effective pain management options for all.
Opioids are a complex and sensitive subject for all of us. However, despite the current problem and stigma, opioids are still medicine for those of us who live in daily pain at levels that would put most in the hospital, but we pain patients call another day that ends in y.
Thank you for your time and please let me know how I can help you with this issue. In this case, I’m both a chronic pain patient and fellow expert on what it is like to be a person living in near constant, chronic pain.
Sincerely,
Alan Brewington (Insert Your Name Here)
