99: Living With and Moving Beyond Chronic Pain with Sarah Shockley

“Of course we want pain to end, absolutely. But paradoxically, the fastest way to get through this is to be in it, to be with it…there’s a reason that pain has shown up. It’s trying to show us something…it’s a messenger whether it’s emotional or physical…that part of us that says ‘I need help, I’m out of whack here, I’m out of balance, you need to pay attention to me.’”

11.2% of  American adults experience some form of pain, often at severe levels every day and have for the previous three months. A 2006 survey from the American Pain Foundation found that the vast majority of pain sufferers feel they have no control over their pain, that it severely impacts their quality of life, while 77% of the participants surveyed reported feeling depressed. Chronic pain can cause both mental health struggles, trouble in interpersonal relationships and feelings of powerlessness or and loss of identity.     When Sarah Anne Shockley was diagnosed with Thoracic Outlet Syndrome, her entire life changed. Due to acute, chronic pain, she found herself fighting and enduring every day for years. What began as a battle became a journey of understanding and redefining pain for in the hopes of healing and ultimately living a fuller life. Sarah is the author of The Pain Companion: Everyday Wisdom For Living With and Moving Beyond Chronic Pain. She has been a columnist for Pain News Network and is a regular contributor to The Mighty. Sarah is a multiple award-winning producer and director of educational films, including Dancing From The Inside Out. She has also worked in high-tech management, as a corporate trainer, and teaching undergraduate and graduate business administration. She currently resides in the San Francisco Bay Area.   Resources Website: www.thepaincompanion.com/ Facebook: www.facebook.com/thepaincompanion Twitter:  twitter.com/thpaincompanion Youtube: www.youtube.com/channel/UCJ9F7KcLrkZRWLVtseDnA3Q In This Podcast, Dr. Viado and Sarah Shockley Discuss:  
  • Sarah’s experience with Thoracic Outlet Syndrome 
  • Experiencing pain in a pain avoidant society 
  • Changing our mindset to sit beside pain  
  • Viewing pain using the metaphor of a wounded animal
  • How to support a loved one in pain 
Time Stamps:   4:22 – Sarah’s Personal Experience with Chronic Pain  12:50 – Turning Toward The Pain  14:55 – How to Reclaim the Driver’s Seat  18:32 – Having a Dialogue with Pain and What Pain Might Say  24:00 – Parallels between Physical Pain and Grief  25:50 – Pain as a Wounded Animal   30:55 – Tools for Living with Pain   37:30 – How Loved Ones Can Support People in Pain   Quotes:   5:47 “My life went from being very active, I was a resourceful, competent person, I was a single mom, I was the person who held things together and got things done, I had to be the breadwinner of the family and virtually overnight went to an absolute and complete stop. Not only a lot of pain but also, as I was saying, a loss of mobility in the body so I could barely do anything, it was very painful to move even.”   7:10 “I tried living with it for a while and there wasn’t much inspiration there but after some years of living with this and having it, you know the acuteness kind of lifted up after a while because I stopped doing pretty much everything but then I was just going on in a lot of pain, day after day, week after week, month after month and it turned into year after year and I finally said I can’t live like this. I have got to find a way to be differently with this pain. So we had tried different methods of trying to heal it, that didn’t work, it made it worse. And I went to to the other end of the spectrum of ‘Okay, I’ll just live with it, I’ll just put up with it.’ And that was better than fighting and resisting it, certainly, it was better than that. But it wasn’t healing anything. And I know a lot of people are given that advice you know, ‘Just put up with it, live with it, keep going, carry on, do the best you can, ignore it’ that’s a new thing that pain acceptance therapy has an element of ‘Just ignore it and pretend it isn’t there,’ and if that works, great. But for me, it wasn’t helping me get better. So I finally just got to the end…‘I can’t look down my life, all the years ahead of me and say I’m going to be in the same place or worse’ so I what I started doing, because I didn’t have a whole lot of things offered to me in terms of medical treatment or approaches, you know when you’re in chronic pain, there’s not a whole lot of people who really understand that unless they’ve been in it, you feel very, very alone in it. You’re kind of living in you’re own world of pain and it’s not always clear to others because they haven’t experienced it, how much it affects you. It’s not just that you’re living with physical pain or in physical pain, that’s a huge part of it of course. But it’s as if pain has moved in and taken over your whole life so it’s like you’re living with a roommate you didn’t ask for who’s really awful. And they’re not just like sleeping on the couch, they’re like in your body, you know? You go to the bathroom, you go to shower, you cook food, you’re with your child, you’re driving – pain is with you everywhere and that is such an invasion and such a sense of having lost your life and yourself and I know many people feel this way. We talk about physical pain a lot from the physical aspects of it, from the physiology of it and from the medical aspects of it, which makes sense of course. But it’s not limited to that. It begins to take over your whole sense of self and it certainly affects the rest of your body…it travels, it begins to invade the rest of your body because the rest of your body tries to compensate and you are exhausted, you don’t sleep very well and also it affects you, it affects your feelings about yourself, it affects your entire life and everything you do is related to or in response to or is affected by or has to include pain…The way we deal with pain is we say ‘It shouldn’t be there, it can’t be there, don’t talk about it, don’t express it, don’t feel it, don’t have it, it’s wrong, it’s bad,’ and then that makes the person who is experiencing pain, whether it’s physical or emotional, and often the two do go together…but it makes that person feel wrong and bad for having the pain. So, it’s a really unhealthy way of dealing with pain. You know, we’re on this human journey and we may not like it but we are going to experience things like loss and we are going to experience things like pain, physical, emotional pain, we’re going to experience death, you know our own at some point, people around us are going to leave and to pretend to not feel that or to pretend that that isn’t going to happen or to pretend that when it happens, we have to quickly stop it from happening or run the other way or don’t look at it or don’t feel it – that’s not really helping the situation.”     11:53 “We’re not allowed to actually just have the pain we’re already in so that makes it very difficult to heal and I really feel like that’s part of why chronic pain, whether it’s emotional or physical, stays around – because we try to minimize it or put it in a little box and say ‘It only lives over here, I’ll take a pill for it,’ or somebody says ‘Here just take a pill for it,’ and that goes or both emotional and physical pain, and then forget it about it. Carry on with life, put it over here. And that just doesn’t work very well, obviously, because we have so many people in chronic pain of all kinds.    13:09 “It’s very counterintuitive to have this sense of – instead of immediately labeling the pain itself as bad, as something that has to be ‘killed’ – you know we call our medication painkillers – and put away and stopped, to instead take what I think is a more healing approach to it and that is to turn toward it, as you were saying. And at first the response is ‘What, is she crazy? I’m not going to turn toward my pain! Why would I do that?’ and of course we want pain to end, absolutely, but paradoxically, the fastest way to get through this is to get through it, is to be in it, to be with it…What we want to do is imagine that pain has a positive purpose, that there’s a reason that pain has shown up. It’s trying to show us something and in a sense, really, it’s a signal and it’s a messenger whether it’s emotional or physical, but it’s part of us trying to ask for help, it’s part of us – in this sense, it’s the feeling of us trying to heal something. It’s that part of us that says ‘I need help, I’m out of whack here, I’m out of balance, you need to pay attention to me.’ And that may seem obvious but the way we pay attention is not always healing.”    14:55 “I have found…that the most constructive and healing way to be with it is to actually be with it… instead of confronting it like, there it is, you’ve met pain – because that’s an engagement…being in denial or being resistant is a direct engagement with it. You’re having to hold that door shut or push against it all the time, which is exhausting. Trying to deny something or push it away is exhausting. So instead, to kind of invite it to be beside you rather than something that you’re fighting, and sort of sit down with pain and say ‘What are you trying to tell me? How do I need to change? What’s going on here?…What do I need to know? How do I need to shift? What’s your purpose? What positive thing are you trying to tell me or bring me or show me? And that in itself [is a] very simple but very profound shift because that will begin to, well the whole body relaxes, for one thing…because it puts you in the driver’s seat when you’re fighting pain, pain is in the driver’s seat and you’re not going to win that battle, very seldom do we win that one.”     18:30 “Whatever you’re fighting, whatever you’re in battle with, that’s who’s driving the bus. If You’re in battle with pain, it’s pain who’s driving…that’s the quality of your journey.”     21:14 “We rarely just stop and relax and be with ourselves and be with our bodies and be with our emotions and sometimes pain is showing up to ask us to shift that and take that mindset or that approach, like  we do with our normal life to sort of get through things and get to the top and reach the goal and then trying to apply that to healing…and some people do that and it works for them but I didn’t find that that worked for me. It was not congruent with what my body was asking for. My body was asking for “Whoa, slow down, you don’t like this but slow down.’”    23:50 “Pain can be a teacher and it’s not the teacher any of us really ever want to have but sometimes it shows up and if we can allow pain to teach us things, then we can try to be different with ourselves. Some of the things that show up with pain are our fears – our fears of not being good enough, our fears of not getting to the other side of it, our fear of pain itself, our fear of having to feel it and yet it’s similar to grief in a lot of ways. When somebody’s grieving, we often feel like we’re supposed to sort of distract them or help them to quickly get back in their life or do something else or never talk about that person that passed or whatever and I think we’re learning that’s not really a very good way to approach grieving. The person who’s grieving needs to feel it, they need to feel that loss. It’s a loss. Someone passed. Or they lost someone in another way but the way to get through grief is to be in it and it’s very difficult. And yet, that’s the only way to move beyond it is to be in it and physical pain is similar to that.”     31:47 “If you have things that you love to do that feel like the you of you, I would highly recommend doing them and as a much or often they’re very little ways that you can do when you’re in pain but if you can find a way to do them even in the small amount – it’s a way of being with yourself even while you’re in the pain. A lot of times, we put ourselves to the side and we just focus on ‘I’ve got to get through this pain thing,’ and paradoxically or at the same time, getting through the pain thing needs to involve our whole being so it’s almost like a soldier needing to get through to the other side of pain…I think it’s really important to find ways to express the pain we’re in…In whatever way appeals to you, whether it’s writing or dancing or singing or talking to someone, or being with an animal and talking to an animal or being in nature, being with the pain that you’re in and then also finding a way to express through whatever medium it is, how it is and what it is for you.”    34:48 “We always heal ourselves. So we kind of need to take back both that responsibility and also that empowerment to now I’m always healing myself and it’s not just necessarily only going to be limited to a physical remedy because I am more than physical. So I am a soul, I’m a spirit, if you want to say it that way, I certainly have a mental aspect to myself and an emotional aspect and all these live in this physical body and around the same space so in order to heal myself physically, I need to engage my emotions and my soul and my spirit and my thoughts and vice versa. If I’m feeling something emotional, I’m probably going to need to engage my body in that.”     39:16 “There’s a lot of shame to being in pain. You feel shame for not being able to heal and a lot of times people around us keep asking us ‘Have you tried this, have you tried that? Are you really working on this? Are you sure you want to be out of pain? Maybe you’re doing this for attention. Have you thought maybe there’s an emotional component to this?’…We’re under a huge amount of pressure to heal and to heal fast. In a loving way, people want us to come back to life. They want us to be who we used to be and they want to be able to rely on us or to be with us in ways they can’t right now…But there’s also an impatience there and people around us are often afraid of pain themselves so there’s this whole universe of things that are going on at the same time so I would say for people that are caring for people in pain, loving people in pain, being coworkers for people in pain – to as best you can try to understand, through talking to them like ‘How has this affected your life?’ rather than ‘Have you tried to fix yourself this way?’ Be a little more respectful of the fact that they’re probably doing everything they can already to heal and it’s not always helpful to offer another suggestion for how they cannot be where they’re at.”