[image quote]: "When you're making it harder to access these drugs, you're making it harder for people who don't have addiction to access those drugs too...[but we're] not providing the proper healthcared for people with addiction, and [we're] not allowing the proper healthcare to be accessed by people like me who need painkillers on a regular basis." - Jen, episode 22; chronic pain patient

[image quote]: "When you're making it harder to access these drugs, you're making it harder for people who don't have addiction to access those drugs too...[but we're] not providing the proper healthcared for people with addiction, and [we're] not allowing the proper healthcare to be accessed by people like me who need painkillers on a regular basis." - Jen, episode 22; chronic pain patient

22 Pain is Personal (episode page)
Description: In this episode Jen talks about needing regular opioid pain medication at a time when those medications are public enemy number one. We talk about why she needs access to these medications, how we deal with drugs here in the US, how that has created a climate in which we can't have open and honest conversations about drug use, and how challenging it can be to really treat chronic pain. We discuss the important distinctions between addiction, abuse, and dependence, and the many tradeoffs and compromises we often have to make in treating chronic health conditions. In today’s bonus episode, we talk about cognitive difficulties and brainfog, privilege and the response to the current opioid epidemic in contrast with the response to the crack epidemic in the 80’s, and the social isolation of being a non-drinker in their 20’s.

[intro]
Hey there and welcome to In Sickness + In Health, a podcast about chronic illness, disability, medical traumas, and everyday uncomfortable healthcare experiences. My name is Cara Gael; I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more.

Nothing said on this show should be considered medical advice. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, but I wish you a lot of luck. Every person is different, even within disease groups, so none of my guests should be regarded as official representatives or spokespersons for their conditions. Please respect their very personal choices, and unless they ask for it, please don’t make suggestions about treatments or lifestyle changes. Unsolicited medical advice is almost never not annoying.

This is especially true for today’s episode. We’ve talked about medication stigma on the show before, and today we talk about the added stigma of using narcotic pain medication. This episode is about pain management in adults with complex chronic pain conditions. This episode includes frank talk about drug use, so if that will be upsetting or triggering, maybe don’t listen to this one. Jen is bravely sharing about her experience as a chronic pain patient and opioid user. She does not need treatment recommendations or judgements from anyone about the way she is currently managing her physical and mental health. She and her medical team have that covered. One thing she IS looking for, however, is a recommendation for a physical therapist in the Austin, TX area that is familiar with joint hypermobility.

Like me, Jen has Ehlers-Danlos Syndrome hypermobility type, which is a genetic connective tissue disorder that causes all sorts of joint problems including frequent dislocations and subluxations, as well as a host of conditions that occur secondary to the connective tissue issues. These can include, but are not limited to: chronic pain syndromes like Fibromyalgia, moderate-to-severe chronic fatigue and brainfog, gastrointestinal problems of just about every kind, chronic headache disorders, pelvic dysfunction, exocrine gland issues like dryness and excessive sweating, dysautonomia including POTS (which we talked a lot about in the dysautonomia series the podcast launched with), and immune system issues like Mast Cell and Autoimmune Disorders. I’ll include a diagram of this on the episode page because I know it's…. a lot. It’s a lot to deal with, and a lot to try to diagnose, treat and understand.

Each person with EDS, even within the same immediate family, has unique constellations of symptoms and secondary conditions, and at widely varied degrees to which it affects their life. Unfortunately the condition is not taught very well, if at all, in medical schools and so many patients don’t get diagnosed until adulthood and have a hard time finding doctors that can help, which has been true for both me and Jen. You can hear a more in-depth description of the condition in episode 03, where Rebecca talks about how it has affected her, and in my episode of the Just Talking Podcast, hosted by Christopher Snider, my guest from episode 07 of this podcast. In that interview, I talk about my long diagnostic process, some of what EDS looks like for me, and starting In Sickness + In Health.

Like actual zebras, no two EDSers have the same stripes. Most people with EDS experience a great deal of different types of chronic pain, both from the joint complications, and complications from the secondary conditions. Not only do I have several different types of pain that need to be treated differently, I have several different types of headaches alone. Unfortunately, some doctors were taught and believe that EDS does not cause pain. Which… makes me want to laugh and cry at the same time.

If you don’t know much about chronic pain, or haven’t heard it yet, check out episode 11 of this podcast, What a Pain! w/ Jill Fancher, PhD. She is a pain psychologist and chronic pain patient herself. We talked about some chronic pain terminology and concepts, how she came to study pain, the devastation of being stuck in diagnostic limbo, stigma, how different people experience pain differently, existing in the liminal space between patient and provider, and the feedback loop between chronic pain, anxiety, and depression. As always, you can find links in the show notes to those episodes, and some of the stuff we talk about in this one.

Jen talks about needing regular opioid pain medication at a time when those medications, and the people who use them, are public enemy number one. It’s an extremely complicated issue, but we talk about why she needs access to these medications, how we deal with drugs here in the US, how that has created a climate in which we can't have open and honest conversations about drug use, and how our healthcare system is not only failing patients, but addicts as well. We discuss the important distinctions between addiction, abuse, and dependence, and the many tradeoffs and compromises we often have to make in treating our conditions. In today’s bonus episode, we talk about cognitive difficulties and brainfog, privilege and the response to the current opioid epidemic in contrast with the response to the crack epidemic in the 80’s, and the social isolation of being a non-drinker in their 20’s.

Like we talk about in the interview, not all pain patients are the same; pain is personal, and pain management should be as well. Different people have different needs and different responses to different medications and different types of pain that need to be treated differently. Chronic use of opioid pain medication is not ideal, but for some patients, they are their best option. Or, like in Jen’s case, are part of a comprehensive approach to managing complex chronic pain. Patients for whom opioid pain medications are their best or only option, are often being left behind in the nation’s latest effort to combat addiction, and still in too many states don’t get access to the full range of other pain management options like cannabis.

Jen and many others have repeatedly found themselves frustrated by the conversations about the opioid epidemic that so often leave out the perspective of pain patients who actually need these medications to have some semblance of quality of life. She contacted me after first talking to the Only Human podcast about her experience as a chronic pain patient, in reaction to their episode with a physician and former addict.  

As patients, we often have to make difficult choices about treatments, and our best options might be things that carry some degree of risk. In fact, most of them do. And on this week’s episode of Only Human, they actually talk about this phenomenon in the context of medication to treat bipolar disorder in a patient who faced a choice between her sanity or her kidneys.

Addiction absolutely is a problem, I want to make clear that we’re not minimizing the seriousness of that; it’s something that has touched everyone’s lives, and like we talk about in the interview, this is a very complex and very emotional topic. But undertreated chronic pain is very serious, and costs people their lives too. This is not an episode about addiction, and it's not an episode where we’re going to position chronic pain patients against addicts either. Both conditions jeopardize the mental and physical health of those affected by them. Addiction is a separate, complex chronic condition than deserves its own episodes. So if you’d like to talk about your own experience with addiction, please let me know.

Our healthcare system is fundamentally unequipped to deal with treating addiction as a chronic health condition, just as its unequipped to really deal with any other chronic health condition. We also have a long history of criminalizing drug use, which while that’s starting to change, has had far reaching effects on every aspect of this.

Before I get into the interview, i just want to take a moment to thank some people who have helped me out with the podcast so far. For one thing, thank YOU so much for listening, and for all your wonderful feedback. It’s been really wonderful to hear from people that the show has been informative, and helped them or someone they care about. A big thanks to my partner for supporting me in this from the beginning and contributing to the project in various ways, including making the music for me. Thanks to Joel Kutz, host of The Dark Place podcast which just came back from hiatus with a new episode this week, for a lot of good advice and feedback when I was starting out. Thank you to those who have supported the podcast by rating and reviewing it on iTunes, as well as those who have made monetary contributions: My cousin Katie was the first, and has been so supportive of this endeavor from the start. Big thanks to Chelsea Freund of The Sick and the Dating blog for her generous contribution, which enabled me to purchase a different microphone so I can more easily record in the field, and hope to use it the near future for reporting from conferences and stuff. And thanks to Stanford R for being our first Patreon supporter!

If you’d like to help out the show, you can do so either by subscribing, rating and reviewing us on iTunes, or donate on a one time basis using PayPal, or recurring basis for as little as $1 per month on Patreon. You can find links in the show notes and at insicknesspod.com/donate.

If you’re listening to this episode the week it comes out, I’ll be joining Chelsea Freund of the Sick and the Dating and Nikki Seesfeldt of As I Live and Breathe for their fifth Sickadilly chat, on Friday March 4th at 3pm eastern time. We’ll be talking about crowdsourcing tough diagnoses. They have been doing these livestreamed video chats on Fridays, on a new platform called Blab. You can watch it live, or catch the recording later. I’ll link to that, and past chats in the show notes.

Find resources and more from us at insicknesspod.com and on social media at @insicknesspod, and you can reach me by email at insicknesspod@gmail.com.

[interview]

[outro]
You can hear us talk more about how our chronic illnesses have affected our social lives, cognitive difficulties and brainfog, and we just barely scratch the surface of how our government is responding to the opioid epidemic in contrast with the response to the crack epidemic in the 80’s.

Join me with Nikki and Chelsea for #Sickadilly chat on Blab this friday march 4th at 3pm, when we’ll be talking about crowdsourcing tough diagnoses.

Find resources and more from us at insicknesspod.com and on social media @insicknesspod. And don’t forget to be excellent to yourselves and each other.

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BONUS EPISODE