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Sometimes it feels like pain has taken over my whole life. I feel as if I'm lost at sea, alone and adrift, with no safe haven in sight. This video is about how I get my bearings again when all seems hopeless.
How many times has someone assumed they know more about your chronic pain than you do? Countless?
I can’t tell you how often some random person has offered unsolicited advice before even finding out what my condition is, what I’ve already done, what I am doing now or even if I need or want their help.
Medical professionals and alternative healers I just met in a social setting have assured me they can make me pain-free if I will just come to their office for one session. Seriously? Then, it’s implied I don’t want to heal if I don’t hire them.
Sigh. Has this happened to you?
Thanks, But, No Thanks
Here’s some thoughts about what to say to these probably well-meaning, but misguided, people:
Thank you so much for caring. Truly.
I see you want to help me get better, and you may even be an expert in your area. Please respect and honor that I am also an expert — an expert in living with my specific condition and pain — and please respect my response if I already know what you have to offer won’t help me right now.
You probably don’t know that people take the opportunity to tell me how to get better all the time. And that puts me in the position of having to constantly say no, of having to justify not taking their advice or hiring all those healers who want to massage, balance or realign me or fill me full of some miracle supplement.
You see, when you sincerely offer your advice, I don’t want to just blow you off, which puts me in the position of feeling like I have to explain myself to you and I really don’t want to have to do that. It’s exhausting.
I have to tell you about all the things I’ve already done, how chronic pain is different, not straightforward and not easy to deal with. This puts me in the very strange and uncomfortable position of constantly having to defend the reason I’m still in pain, which you might hear as if I’m resisting healing (which isn’t the case). This is a really unpleasant feeling; it’s not one I enjoy.
Help That Is Not Helpful
Can you imagine? You’re walking around with a broken leg in a cast and people keep coming up to you, giving you advice on how to treat smelly feet or what to do for a hangnail. You have to keep explaining over and over again that a broken leg is much worse than that, it takes a lot longer to heal, that you’re already doing everything you know how to do, and, thanks very much, but that advice isn’t really applicable. Over and over and over and over and over...
Can you imagine how exhausting that is, especially if the person offering the hangnail treatment is insulted you aren’t as excited about it as they are?
As either helpful friends or healing professionals, when you start the conversation by telling me I shouldn’t be in pain (presumably because you’ve now turned up to make it all better), you’re making me wrong for still experiencing pain, and putting yourself in the position of savior.
I’m sure it’s entirely unintentional, but it’s an insult to my intelligence and my motivations and minimizes the incredible challenges I face every day, as well as the long road I’m walking, trying to actually come out the other side of pain permanently.
Being in pain is not where I want to be, I can assure you, and it is not a deficiency in my character. If I could be out of pain, I would. If any of us could be out of pain, we would. We are not resisting healing. We are in chronic pain. That’s the definition of the word. It won’t go away easily.
Please, Do This Instead
Here’s what I would most prefer you do when we meet:
1. If I haven’t sought you or your advice out, ask my permission to talk with me about my chronic pain. Please don’t start the conversation by asking me if I’ve tried XYZ, or telling me what I should be doing.
2. If I’m open to talking about it, find out what my specific condition is, how it affects me (don’t assume you know), how extensive it is, how long I’ve had it and what I’ve done already.
3. If you still feel you have something to offer, ask my permission to present whatever piece of advice or healing modality that may be. Please don’t be offended if I simply say, thanks, but no thanks.
4. Be honest. If you’ve helped other people with my specific challenge, great — I may want to hear about it. Don’t make wild claims about how you can heal me almost instantly when no one else has been able to in years.
5. Be gracious if, after hearing what you have to say, I decline to work with you or take your advice. Don’t assume it means I don’t want to heal. I’m sure you believe your method, supplement, diet or exercise is the right one, but so does everyone else. Pushing it on me makes me as uncomfortable as someone pushing their religious beliefs or their multi-level marketing program on me.
If I do decide to work with you or take your advice, know it will be one layer of a multilayered approach to healing. This means it is unlikely that one thing will completely heal my chronic condition. It’s a group effort. Don’t keep asking me if I’m all better now. And if I don’t improve, or if I get worse, let’s agree it’s not your fault, but it’s not mine either.
In summary, know I appreciate your caring, but please give me a break with all the advice. Don’t feel bad if I decline to call your favorite massage therapist or book a session with you as a healer. I’m already working full-time on healing as it is, and may have limited resources.
Thank you for your concern. Really. And the best advice I can give you in regard to offering your unsolicited services or advice? Don’t. Just don’t.
I teared up when I watched the video “Headway” by Access Oneness, because it is so like life, and particularly, so like living with pain. I highly recommend taking a moment to watch it.
A man starts walking along a tightrope suspended over a river and loses his balance. It looks like he’ll fall into the river, but he catches himself.
Then something absolutely wonderful happens.
He uses the place of falling, the place that starts to look like a mistake, starts to look like failure, and makes something new from it – something completely unexpected and creative. It’s remarkably beautiful.
Making the Journey
I found watching this video to be a very visceral and emotional experience. Yes! I thought, this is exactly how we can be with our pain. We can cling to it, we can hang ourselves from it, we can twist ourselves up inside it and stay stuck and caught in it, hanging over an abyss, or we can use it to create beauty.
Both the tightrope and pain set parameters around experience, but they can not fully determine who we are. They do not determine our response. We may be living with severe limits, but we can create something new in that, through that, with that, and beyond that.
The tightrope limits, yes, but it is also a way across.
Pain limits, yes, but, somehow, it is also a way to something.
We may have to live with pain for a long time – we may have to keep coming back to it, just as the tightrope walker keeps bouncing off and coming back to the rope – but we can also create a kind of awesome flexibility and resilience within that.
The Space Above and Around Pain
This video could have depicted a stressful walk with the man focusing almost exclusively on his footing and the tightrope itself, trying to control every aspect of the experience, the way we often focus on and try to control our pain experience.
Instead, through the looseness engendered by his fall, his relationship to the tightrope becomes meaningful, alive, exuberant and full of freedom. He shifts his focus to the spaces above and around it and uses it to propel him into places he never would have gone before.
And this is the way we can be with our pain, I feel. Yes, we are in it, yes, it defines a lot about our lives, but we have choices within that and around that.
We can choose to focus on the pain itself as something to be overcome or eradicated or fought against. We can look down at it, metaphorically speaking, and hate it. We can stand in one place, our feet aching, our body tense, trying to hold our balance in one stuck position, whatever that may mean for us.
Or we can create.
Even with the pain, we can create. Even if our creativity is more internal than external, we can breathe, flex, adjust. We can re-learn to believe in ourselves and to dream.
Imagine if the tightrope walker had chosen to fight the rope, or cut it, or simply sit down and hang onto it. These are all options open to him, but look what he would have lost!
When you watch, notice how he completely changes his relationship not only to the rope but to the space around it – he becomes more engaged with the air, with gravity, with his own body, and the music, and through this engagement he allows himself more freedom, and allows whatever happens to simply and elegantly inform his next move.
This is so much how we want to be with our pain, I believe.
I think it bears watching Headway repeatedly, for those of us walking the tightrope of pain. We can imagine ourselves moving more freely, practicing inner agility and creating a relationship with pain that is fluid, has breath and may even propel us into unexpected places of freedom and beauty.
Consciously or unconsciously, we often push our “real” lives to the side when we’re in chronic physical pain. We think we have to.
We imagine that we just have to get through this one thing, this present phase, this latest difficulty, and then we can return to our lives, or be returned to our true selves. Only then can we re-engage again.
Of course, there are things we have to give up when we’re in deep pain, that goes without saying, but we often stop interacting with others and participating in events and activities almost entirely because we can only do them minimally or from the sidelines. And, in that way, we put our lives on hold.
Again, there are absolutely legitimate times when we feel we have to withdraw from others for awhile in order to heal. We need more rest and less stimulation than normal, and we often need to pull away from group situations in order to give ourselves that space.
But it’s also important to find ways to step back into life, to re-include activities we enjoy and people we enjoy in whatever capacity we can, even while we are still living with pain.
When we’re in pain, we may not remember that we are still important to others. We still have an impact on the people who love us. They miss being with us, they still care for us, and they are part of our overall connection with life.
When we feel terrible, it’s easy to forget that we are still lovable and still loved. Withdrawing because we assume that people don’t want us around, or because we feel we don’t have anything to offer, cuts off opportunities for loving engagement with life. It’s not entirely healthy, and it’s often not happy either.
We may not be able to be with others or participate in life in the same capacity as before, nevertheless, our ability to love is still present and we must never allow that to be shut down by pain. When we withdraw completely, we aren’t necessarily being abandoned by others, we are then the ones who are pulling away.
When we’re in pain for a long time, it’s true, some of our friends and acquaintances will no longer be part of our lives, they will move on without us. But others will want to stay connected, and others may show up in unexpected ways if we’re open to that. I think it’s important to find out who is still there for us, who tries to understand, who tries to hear, who offers to help in whatever way they can.
More Than Getting Through
And it’s important to reach out, not just for help (which is, in itself, a very important skill to learn), but to reach toward life itself and toward engagement. It’s important not to wait for pain to stop before we can carry on with life.
It’s so important to find ways to reach out in love, and to express love. To let dear ones know that, even in pain, we care about them. No loving gesture is too small. A phone call, an email, a cup of tea, a short visit, a meetup, an update. I’m still here. I still love you.
We may choose to put our life on hold while we’re in pain, but it doesn’t wait for us. It keeps flowing on. That can become a great sadness if we wake up a few years later and realize we’ve disconnected ourselves from the stream of life.
It’s sad, and it’s frightening. Best to find ways, however small, to remain connected with others, connected with life, even as we’re on this challenging and often lonely journey through pain. Especially while we’re on this challenging and lonely journey.
And I’ve found that to be the strongest and most positive path of healing.
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.
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.
Welcome to The Pain Companion Blog! Reflections and sound advice on living with chronic pain - a peaceful way station on the path to greater well being.
About Sarah Anne Shockley
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© 2015-2018 Sarah Shockley and thepaincompanion.com. Excerpts and links may be used, provided that full and clear credit is given to Sarah Anne Shockley and www.thepaincompanion.com with appropriate and specific direction to the original content.