Subscribe to The Pain Companion How I Freed Myself of Feeling Ashamed of Chronic Pain
(This article also appears on The Mighty) It doesn’t make any logical sense that anyone would feel guilty about living in pain, but I have.In our goals-oriented culture, we’re supposed to keep on keeping on and not complain. We worry that if we let ourselves withdraw from participating fully in life for more than a very brief time, we will be left behind. Or worse, it will mean that we are simply not good people. Good people take short breaks and then keep going, keep...
It doesn’t make any logical sense that anyone would feel guilty about living in pain, but I have.In our goals-oriented culture, we’re supposed to keep on keeping on and not complain. We worry that if we let ourselves withdraw from participating fully in life for more than a very brief time, we will be left behind. Or worse, it will mean that we are simply not good people. Good people take short breaks and then keep going, keep trying, never give up and never say die. In fact, it is considered almost a sin to do nothing, to step out of the constant stream of work, entertainment, and busyness.But once I was injured, I couldn’t do that anymore.I was forced to slow way, way down and I felt bad about it. I thought I should try to take care of all the things I used to take care of. I thought I had to hide my pain, pretend it wasn’t there and attempt to do as much as I would normally do. I thought I was supposed to just “grin and bear it.” But that didn’t heal me. It only made things worse.As the length of time I was in pain lengthened, I experienced a subtle, creeping, persistent feeling of shame and failure. Here are the seven things I learned to tell myself to counteract my feelings of shame and guilt around living in persistent, unhealable pain:1. I am not wrong for being in pain. When It Feels Like You're Drowning in Pain
Being in pain is not my fault. I am not wrong, guilty, bad or screwed up. Being in pain does not equate with being weak, bad, or needy, nor does it mean I am inadequate as a person.2. I am not on anyone’s timetable.
Pain keeps its own timetables and no one has the ability to read them completely accurately, not even my doctor. My body is on its own healing schedule that can’t be forced.3. It’s OK for me to do less.
While in pain, my ability to attend to the every day tasks of life is compromised.It’s part of the package. I give myself permission to do less, and to be honest with others about how much I can and can’t handle.4. I can ask for help.
Sometimes shame and guilt about needing help makes me reluctant to ask for it, but everyone has times in life when they need to depend on others to help them or take over what they can’t do. This is my time. I will ask for the help I need as clearly and honestly as I can.5. I can receive financial assistance graciously.
One pervasive perception we have in our culture is that people who accept assistance are mooching off society. The truth is, the money is supposed to be there for me, whether it is from charity or government assistance. At times I have put money into the collective pot and now I need to draw money out. It’s the way it’s supposed to work.6. I can stop trying to make other people feel better.
Making other people feel better can take the form of a) not expressing what I need so I don’t burden others, b) downplaying my continued pain so my doctor or other caretakers feel better about the job they’re doing, or c) attempting programs or exercises that I’m not ready for because I am responding to someone else’s urging, or avoiding blame for not trying harder.7. I know that healing is my current job.
My real job, for now, is healing. I won’t judge myself harshly according to what I used to be capable of doing. I am handling another aspect of my life right now that requires a great deal of time and energy.In doing all of these things, I am taking care of myself, which has to be my highest priority right now — without shame or guilt.
The other day, a young friend of mine was nearly swept out to sea. He was surfing alone when the waves died. Strong currents pulled him further and further away from the shore toward the open ocean. He got turned around and couldn’t see land anywhere. He had no idea which way to paddle and there was no sign of help. Isn’t that how it feels, living with pain? We’re in uncharted territory and don’t know where to turn or if there will ever be a safe haven again....
The other day, a young friend of mine was nearly swept out to sea. He was surfing alone when the waves died. Strong currents pulled him further and further away from the shore toward the open ocean. He got turned around and couldn’t see land anywhere. He had no idea which way to paddle and there was no sign of help. Living in Pain? You Are a Warrior
Isn’t that how it feels, living with pain? We’re in uncharted territory and don’t know where to turn or if there will ever be a safe haven again. We’re drifting out there in the sea alone. Maybe we’ll find a way and maybe we won’t. Maybe we’ll be stuck out there for a very long time and maybe we’ll go under.
The currents were carrying my friend further away from safety. Not unlike the currents of fear, panic, victimization, despair. They take us further from where we want to go, further from healing.
That’s when we have to look within to find the place in ourselves that believes, even one iota, that we are worth the journey. We have to look up and out from ourselves too, to find something greater than us. Something we can focus on, something that can guide us, something that gives a ray of light, of hope. Then we have to use our will and our strength and our courage to begin to move toward that.
My friend eventually saw the tip of a roof over a wave and paddled like mad toward it. It was hard going against the current. He was exhausted and terrified. But when he told me the story, I could see that something inside him had changed. He’d had to dig deep inside himself to find reserves he didn’t know he had to be able to overcome his fear, fight the current and find his way back.
His struggle was so like our journey through pain. How hard it is. How we have to keep our heads above the water, even when we feel pulled under. Maybe we rest there for awhile, just floating, and maybe it feels like we’re paddling forever or like the wind is against us, the waves going the wrong direction. Maybe it feels like we might want to gently slip off that surfboard and let the ocean take us. And isn’t that when life somehow conspires to buoy us up just enough to see a sign of hope in the distance?
Those of us who are still here are finding something inside of us that is strong and sure and stable and eternal. Something stronger than the pain, a core that believes in us despite everything we’ve been through. And this is something we can draw on. A touchstone, a place we go to over and over again for inner strength, spiritual strength. It is the part of us that wants to live, wants to heal, won’t give up.
I am still here, I am still strong, I am still paddling and there is a shore out there, even if I can’t see it. Maybe closer than I thought.
Sometimes pain just won't leave, but living in pain does not make you wrong, or a failure. Every day you make it through despite the pain is a day you lived as a warrior. [...]...
Saying "Yes" to Life When Pain Says "No"
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Sometimes pain just won't leave, but living in pain does not make you wrong, or a failure. Every day you make it through despite the pain is a day you lived as a warrior.
This post is the second excerpt from my interview with Jan Black on Nobody Told Me! Podcast Jan: How important is it to not isolate yourself if you're dealing with chronic pain, even if you don't really feel like going out? Sarah: Boy, I'd say that it's paramount. It's extremely easy to do the opposite, to pull in and of course, that's our first response. We pull ourselves back in from life because we feel bad. We do that naturally as an initial response when we...
This post is the second excerpt from my interview with Jan Black on Nobody Told Me! Podcast
Jan: How important is it to not isolate yourself if you're dealing with chronic pain, even if you don't really feel like going out?
Sarah: Boy, I'd say that it's paramount. It's extremely easy to do the opposite, to pull in and of course, that's our first response. We pull ourselves back in from life because we feel bad. We do that naturally as an initial response when we meet pain. That can be fine at first because we need to pull away a bit, we need to have our quiet time, we need to heal. But when pain becomes chronic and is just not getting better we can tend to stay in that mode of pulling away to heal and lick our wounds almost too much.
We can get into that place where we're waiting for the pain to leave before we re-enter life and when that goes on for years, we can become extremely isolated waiting for when it's okay to be part of life again. For those of us that have to live with pain on an ongoing basis, that's the time we need to start to look at that because it can become extremely lonely, very difficult and it's not really healthy to be isolated all the time, I don't believe.
One of the things we have to learn when we are living with pain is how to reach out again even while we're still feeling the pain. How do we re-enter life even if the pain has to come with us? That's a choice we make. How can I be in life? Maybe I have to be in life in smaller ways, maybe I have to think about if I'm going out to meet friends, I can only go out for half an hour, not the whole evening. But begin to find ways to re-enter life again because it's part of our healing process too, to find ways to re-engage with life even if the pain has to come with us.
Jan: You also encourage people suffering from pain to express their pain, explain more about that.
Sarah: I certainly found it personally true and I think it's true for a lot of people that we think we're not supposed to talk about our pain. We're not supposed to show it, we're in a culture that says, "No, no, this isn't supposed to happen." So, we tend to hide it, we hide it sometimes even from ourselves, it's considered a burden if we tell other people about it, but I really feel that it's extremely important to express what's going on. Express how you feel about it, what is it doing to you, how it is affecting your life.
I think it's extremely important to have some kind of outlet for that, whether it is using artistic expression, drawing, painting, dancing if you can, writing. Any way of finding a way to express what's going on for you is extremely helpful and it may not sound like it would be, it may sound like a small thing, but I feel it was the first major step in healing for me.
Part of what I feel keeps pain in place is that we feel like we have to hide it, we feel like we have to cover it up, we aren't allowed to in our culture to express it much, that to me helps lock it in place, which is not healthy.
So, when we begin to express how we feel about it, when we begin to express what it means to us and maybe begin to ask those questions, well, if pain were doing this painting, if pain were going to do some little writing, what would pain look like? What would pain have to say, what would pain paint? Let your pain begin to express too through whatever these creative mediums are and that begins to loosen it up and let it begin to flow and it starts to have a healing effect.
Jan: You say that pain brings with it many unforeseen and unacknowledged gifts, like what?
Sarah: Well, it's hard to accept them at first but when you ask yourself how have I had to change? What has pain asked me to do here? What have I had to do to be able to get through this? You come to find out that wow, okay, I had to learn to slow down, which is for a lot of us, healthier, we're in this very go, go, go culture where we just keep going, keep going, keep going. Sometimes I think pain comes into our lives to point out that maybe it's time to stop being so push, push, push, go, go, go. Maybe it's not the way we would prefer it to show us that message but maybe that message has been trying to come through for a while and we haven't been listening.
So, pain in a sense is a very hard taskmaster, it's a very hard mentor to have in life but it does bring some lessons that are really valuable, that you can keep with you even after you move beyond the worst of the pain or move beyond pain entirely. Certainly, pain has taught me what my priorities are or should be, it really focuses life down to a couple of things. You might be able to do one or two things in a day when you're in a lot of pain and you have to decide what those one or two things are going to be. You begin to realize, to really appreciate your relationships with your children, with your family, with people that you love, and you can weed out the ones that aren't helpful or working for you. So, it brings your life into sharper focus, even though again, it's not necessarily the way we'd want to have to go through this.
We do learn to appreciate when we have a day that is less painful, you begin to appreciate your body, you begin to appreciate that you can breathe. You can begin to appreciate that you can move, and all the things that you've done in life, that you enjoyed so much, that you took for granted like even just mundane things like brushing your teeth. So, you can turn that around instead of making that about loss and how awful that I don't have that anymore, you turn it around and you say, "Okay, what can I still enjoy, what is still here? How can I look for these little things that I used to take for granted and actually revel in them and go, yeah, this tastes so good! Or this moment with my son is so precious to me because I'm still here on the planet even though I'm in pain, I'm still here and he's still here and we're together and we love each other." So, for me, it just brings everything much more richly into the present moment and teaches you to appreciate and to be here and to enjoy the life that you do have.
What Nobody Told Me About Chronic Pain
You can listen to the full Nobody Told Me! podcast and more radio and podcast interviews with Sarah HERE
This post contains highlights from a recent interview I had with Jan Black of Nobody Told Me! Podcast Jan: You write that we may feel there is something wrong with us for continuing to experience pain, explain more about that.Sarah: Our culture is very pain averse I'd say, I mean nobody likes pain, nobody wants to go towards it, but we tend to have a way of thinking about pain as intrinsically wrong and bad and that we should never have it. Those of us that have had to live in pain for...
This post contains highlights from a recent interview I had with Jan Black of Nobody Told Me!
Jan: You write that we may feel there is something wrong with us for continuing to experience pain, explain more about that.
Sarah: Our culture is very pain averse I'd say, I mean nobody likes pain, nobody wants to go towards it, but we tend to have a way of thinking about pain as intrinsically wrong and bad and that we should never have it. Those of us that have had to live in pain for a while, often we get this reflected back to us quite overtly by doctors and by others around us: Why are you still in pain? How can you be in pain that long? Aren't you trying hard enough, haven't you tried this? Why aren't you doing that? Are you trying to just get attention? You must want to still be in pain.
We get all of this negative feedback towards us because our culture says pain isn't supposed to happen. So, if we're still in it something must be wrong with us, we must have done something wrong, we must have failed somewhere and that's really difficult to carry. Another reason why I've written about this is to say to people, you're not wrong, it's not a mistake, sometimes we meet pain - all of us are going to meet pain at some point on our path in life. Sometimes it doesn't leave that easily but that doesn't mean there's something wrong with us, it's some kind of journey that's trying to work itself out. I feel ultimately there is a positive purpose to it even though sometimes it's hard to see.
Jan: How do you get yourself into that mindset where you see that there might be a positive purpose or that at least you could turn it around and look at it a little bit differently?
Sarah: Well, that's in a sense, it's almost a discipline of will, you really do have to work on that, it's not easy. Particularly if you're having a really difficult day and you're in a lot of pain it's really hard to see that there might be something positive to it. So, it does take working through that in your own mind and one of the ways we work through that is we usually start out fighting against pain. When we meet it, the first thing we do is we want to end it and sometimes that works really well and it's over but sometimes it stays around, which is what we're talking about here. We can get in that battle mode with pain where we're fighting, fighting, fighting to end it and for a lot of us, it just becomes exhausting, this ongoing battle every day, every day.
So, you have to get to that point within yourself where you say, 'okay, that's not working for me, that's not ending it and I'm exhausted and I'm frustrated. Actually, it's making it worse because I'm tense, I'm contracted, I'm feeling that anger and that enmity against it.' So, for me, what I did was look at well, here it is, pain is already here, I can't get rid of it, I want to, but I can't, so how can I be with it differently? It's not something I want to be with but how can I make this be a different experience? So, for me, it was trying to see how I can look at pain differently, how I can be with it differently instead of this face-off with pain or pushing, pushing, pushing against it. Well, okay, what if it has a positive purpose? So, it's starting to ask different kinds of questions, like what if it's meant to show me something. I mean it is a signal from the body, it is, in a sense, an alarm signal, hello, I need some attention here!
So, the kind of attention I'm paying to it, is it the kind of attention that's really helping and healing or is it that angry kind of push? So, starting to ask different questions and beginning to think of pain more as something that is coming along with me rather than something I'm facing off against. What I find works for me is to try to continually shift those perceptions and it's an ongoing daily thing. When I meet pain and it is really spiked, I don't like it either, I have to remind myself, oh, yeah, this is where I need to stop, take a few breaths, start to work with it differently and relax around a little bit more even though that's challenging to do.
Jan: What lead you to start writing about pain?
Sarah: The pain wasn't going away. After a year, it became clear to me that I wasn't coming out of it. When we first meet things like this and we have a condition or an injury, an accident, an illness, whatever it is, we imagine it's just going to heal. You have the flu and you get better, you break your leg and it heals and so I thought for the first year that this was going away, but it didn't.
Finally, one of my doctors said, "Sarah, you're going to be looking at living with this for the rest of your life and it could even get worse." That sent me spiraling downward, emotionally, as you can imagine and anybody that gets that kind of prognosis has to face the intense emotional responses like, 'wow, what do I do with that? What do I do with that news?'
So, I started very slowly and painfully just writing down how I felt about living with pain, what it had done to me and how I felt it had invaded my life and taken over. A lot of the first writing was very much spewing out those deep feelings of loss and sadness and blame and shame and all of the things that come up when you live with pain for a while.
I was a single mom, so there was a lot about not being a good enough mother, not being present enough for my son, not being able to do the things I wanted to do with him. I wrote about living with pain and that evolved from me ranting about it into more philosophical thoughts like, ‘how could I be with this differently?'
Jan: I know you said that you wrote The Pain Companion because you wished that somebody else had written this kind of a book that would have helped you.
Sarah: Yes, absolutely. I felt very alone and isolated in my pain and I think a lot of people that are going through this do. It's hard for people that aren't in pain to understand what it's like. It’s really an intense experience. It’s like you're living with a roommate, well really a body mate, that you didn't ask for. Pain is so intrusive, it's so pervasive, it so dictates what you can and can't do. It's there in everything you do, it's there in all your relationships, it's there when you wake up, it's there when you go to sleep. I looked around and I couldn't find anybody at the time that was talking about that or writing about that.
When I went to my doctors - and some were wonderful people and very compassionate - but they didn't get it, they had no clue. They were very much focused on the physiological, what's going on with the body physiologically. But there's a whole other world of living with pain around that that has to do with your emotional self, your identity, how it affects the rest of your life which nobody told me about. I think this is true for a lot of people in chronic pain.