Patient advocacy is a rewarding, frustrating, cathartic, stressful, healing, and a ridiculous job that can best be described as a pain pill wrapped in a freshly baked chocolate chip cookie with a glass of lemonade to drink. Basically, a mostly tasteful experience but there is head scratching (i.e. lemonade with a chocolate chip cookie??). For example, within hours you can have a fellow patient advocate accuse you of being an insensitive ableist then have a newly diagnosed patient thank you for your honesty and thoughtfulness through their tears. I’m still not sure what I was supposed to feel on that particular day.
Basic patient advocacy revolves around creating a story of negativity where you are both the victim of circumstance and a great martyr for “the cause”. Great patient advocacy revolves around telling your story while pushing yourself to new levels of vulnerability and honesty, whether it’s positive or negative is strictly up to the quality of the content and each individual reader. This is an attempt to tell my patient story that includes opioid use, you get to decide if it’s basic or great advocacy.
By most anyone’s definition, I am a high functioning chronic pain patient. However, under no circumstances should a healthy or academic type compare me to another chronic pain patient. Most importantly, no chronic pain patient should compare his or her lives to mine. As a patient with this chronic pain diagnosis I’ve earned the right, just like the basic advocates, to tell my own story. I have gained experience, knowledge, and perspective on life because of my story but regardless of what some may say, I am not an insensitive ableist, what I do encourage is for other patients, healthy, and academic types to challenge, question, or steal my experience, knowledge, and perspective. Mutual discovery, not individual celebrity patient advocates, will be much more beneficial for the opioid conversation than just my word. In the end, I’m just singular patient advocate trying hard to live a meaningful and mindful life while using opioid medications for my chronic pain.
What do I consider to be a meaningful and mindful life as a chronic pain patient who uses narcotics regularly? Hopefully people can identify 3 main ideas behind my definition of a meaningful and mindful life. To begin with, as a male in a diagnosis community dominated my females, I believe it is important for me to bust all stereotypes regarding a male sharing their emotions, feelings, and pain levels. Masculinity should be judged by my strength to share openly and honesty, not with how cool my beard looks or whether or not I can lift a car. Just because my pain is invisible doesn’t mean I need to overcompensate with visible feats of strength. My contribution to the care and support of my fellow patients and friends, my ability to raise the profile of our community, or helping healthcare develop the necessary curiosity so we can cure this crap should be the only measure of my masculinity because it’s the only real test that matters.
Secondly, as a chronic pain patient who consistently uses opioid, I’ve had access to resources and opportunities in my life that too many people in our country have not. No patient should ever feel guilty for earning and receiving opportunities others don’t have. Too many patient advocates spend their time only concentrating on the negatives of their individual story, which is not fair because it’s not the complete picture. Don’t get me wrong, I’ve had and earned the right to have bad days just like others. However, I’m a strong believer in the phrase, “it’s just a bad day, not a bad life!” Yes that is easier for me to say because of the opportunities I’ve had, but that doesn’t make it any less true for the less fortunate than me. Although I’m the first to admit that I don’t always follow my own beliefs, I’m a strong advocate that there is no such thing as a good or bad life, there is just life. My opioid use helps me to live that life, both on the bad days but also the good days.
Finally, I would love to correct the perception that pain medications helps or heals my pain. Pain medications, especially opioids, make it so I do not care about my pain anymore, that’s it. My body and mental health are still experiencing all the side effects of the pain; by “not caring” I have a better chance of coping is the logic behind opioids. The general public doesn’t understand that with this particular disease there still isn’t a cure or “standardized” treatment plan. My, along with my fellow chronic pain patients, quality of life is largely rooted in the idea of simply “not caring” about my real pain. This idea is probably the hardest to express as an advocate. Usually, a life based in the idea of “not caring” is not a passionate or meaningful life upon first observation; however, this is exactly how my fellow pain patients and I have a meaningful or mindful life.
As the saying goes, “talk is cheap”. In everyday terms, what does opioid use mean in my life? I’m currently working thanks in large part to my access to opioids. For example, on Tuesday I awoke in so much lower back pain that I was nauseous to the point of wanting to call in sick. Thanks to opioids, I’ve never had to call in sick because of pain YET, my personal guess is that day will come sooner than later however. Not only do opioids make it so “I don’t care” about my pain but they allow that fighting Alan spirit to shine through. Like I mentioned earlier, I’m a high functioning chronic pain patient because of my Alan spirit. As much as I would like to claim that it was my personal strength and determination that got me this far in my professional life that is wrong, what got me here is my determination and spirit to use any and all available tools, both medically and medication wise, at my disposal.
As a December baby, skiing has always been my sanity for life. It’s my place of peace and release for me. Unfortunately with new hips among other hardware in my body I’m no longer able to ski as well as I was when I was a ski instructor. Those were the great old days! However, thanks to having access to opioids I’m still able to hold my own on a run or 3 before my body decides to crap out. This beats watching TV any day of the week and twice on Sundays. Skiing is an activity where my Alan spirit and ego can stretch its legs for the good of my soul, not bad karma.
One of the hardest things I have ever done, both physically and mentally, in my life was being an epatient advisor to the new delegates at last year’s Stanford University Medx Conference. For those of you that have not heard of Medx, it is a 4-day conference that takes its toll on patients. It’s a completely exhausting but a positive spiritual experience. Helping others so they can have the same experience as I’ve had was a capability that I was not sure I had. Thanks to my tool, opioids, I was able to control my pain for the 4 days of the conference, which meant my capabilities were able to come through that week. Without that tool, I’m 100% positive my pain would have prevented me from being as successful as I was that week. I’m a tough guy, but everyone needs help.
Many, if not most would assume I would regret my rock climbing fall or my autoimmune disease. This is simply not true at all. The truth is I don’t spend a lot of time thinking about them mainly because they are in the past. Those events in my life are no different than going to Medx or skiing some insane powder run. It’s just my life, nothing more. Yes, I did not grow up thinking I wanted to be an autoimmune patient with a serious rock climbing fall and a bunch of car wrecks under my trauma belt. No one does! However, these events have turned into a positive force in my life. I have new and amazing friends, new experiences that I would have never had if I was a healthy, and thanks to my site I’m now a better writer than I thought I could ever be. Until there is a cure for my arthritis and chronic pain, I will continue to take my opioid pain medication not because I’m addicted (yes I understand by most definitions I already am an addict), but because this is my life and it will be a cold day in hell before I relinquish control of my life over my disease!