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Subscribe to The Pain Companion 5 Things People in Chronic Pain Need More Than Advice
So many caring people are anxious to help their friends, relatives, and co-workers who are living with chronic pain that they are quick to offer recommendations and words of advice. But is more advice what people in pain really need?I would suggest, most respectfully, that it is not.Chronic pain is a complex condition that is not easily remedied by typical treatments, supplements, or exercise routines. While we appreciate everyone’s sincere desire to help, what we require...
So many caring people are anxious to help their friends, relatives, and co-workers who are living with chronic pain that they are quick to offer recommendations and words of advice. But is more advice what people in pain really need?I would suggest, most respectfully, that it is not.Chronic pain is a complex condition that is not easily remedied by typical treatments, supplements, or exercise routines. While we appreciate everyone’s sincere desire to help, what we require usually isn’t more advice. To support us in our healing, here’s what we would ask for:1. RespectPlease understand that everyone in chronic pain is doing our utmost to heal. We are not malingering or making it up or exaggerating. We are not lazy, or melodramatic, or trying to get more attention by being ill. In fact, most of us understate our situation in order not to make others around us feel bad. And please respect our intelligence and tenacity. If we have been in pain for any length of time, believe me, we’ve tried most of the treatments, both alternative and traditional, that you have ever heard of. And then some.2. A Free PassJust being in pain is hugely exhausting and we are using most of our available energy and personal resources just to get by. Getting out of bed in the morning and lurching through another day may be all we can manage. The fact that we found the energy and wherewithal to make one important phone call or fill out a necessary medical form may be a major triumph for that day. Moving Beyond the Grief and Isolation of Chronic Pain
3. Understanding That We Can't Be Normal Right NowMost of us are sleep deprived and under a great deal of stress trying to handle work and parenting and relationships and self-care and medical demands while in pain. We don’t have any reserves left over to participate in life at normal levels. We are not being selfish or acting like victims if we have to say no to a lot of things. We are not doing this to make you angry or to get attention. Just having a conversation may take all our available energy. Imagine having pain in your body and the flu and jet lag and severe sleep deprivation all at once. It can be like that most of the time for us.4. Allowances for Our Cylinders Not FiringPeople in pain simply don’t have the brainpower that we normally would. All our available stamina is going into healing and into living with pain. There doesn’t seem to be a lot left over for our noggins to draw on. We forget things easily, we can’t find the right words sometimes, and sometimes our brains go offline for a few moments and we simply blank out. We have trouble focusing and we may not be able to make sense of complicated instructions. Actually, we may not be able to follow any instructions. Just imagine finals week at college. You know, the last day, after not sleeping all week? Remember how brain dead you felt? Some of us feel that way every day.5. Compassion and TrustWhat we really need from you is compassion, understanding and trust that we are already doing our best and to refrain from asking us to hurry up and get out of pain. We need you to not be so scared of your own pain that you refuse to allow us to experience ours, or feel like we have to hide it and not speak of it. For whatever reason, we are still in it for the time being and, even if we wanted to, we can’t move out of it to make you feel better. Believe us, we certainly would if we could. We wish we could be more available to you and to our own lives, but we can’t at this time.Instead of trying to help us by offering methods for healing, we are in need of you simply being with us, being there for us when you can, and trusting us to find our own individual path through pain. We will let you know if we need more than that. We appreciate your loving-kindness, your gentleness and your compassion most of all, and these, really, more than any words of advice, are the most healing things you can offer anyone in pain.
All of us living with chronic pain are aware of how difficult it is on a physical level. Very aware, most of the time. But what we sometimes don’t acknowledge is the immense toll living with physical pain takes on our emotional life as well.We are usually so immersed in the demands of our body pain, that we feel we don’t have the energy or capacity for dealing with our emotional hurts at the same time. These include: sadness, frustration,...
All of us living with chronic pain are aware of how difficult it is on a physical level. Very aware, most of the time. But what we sometimes don’t acknowledge is the immense toll living with physical pain takes on our emotional life as well. When Your Doctor Does Not Believe Your Pain
We are usually so immersed in the demands of our body pain, that we feel we don’t have the energy or capacity for dealing with our emotional hurts at the same time. These include: sadness, frustration, blame, shame, resentment, anger, hopelessness, isolation, and loneliness to name a few.
Sometimes we’re not dealing with them because we feel like acknowledging them will take us under. It’s just too much. Sometimes it’s because they seem like feelings we just have to live with while we’re living with pain. And sometimes, we simply don’t realize they’re there because they’ve become the ocean we swim in every day.
But if we don’t recognize and begin to work to relieve some of our sadness, loss, anger and shame about being in pain, we might find ourselves trapped inside the weight of our own grief and hopelessness. If ignored for too long, the emotions we don’t find a way to acknowledge and express can lead to depression, bitterness, and despair.
Let’s not go there. Let’s see what we can do to relieve the sadness and isolation of living with chronic pain and create a greater sense of ease and well being, even while we’re still living with pain.
Suggestions for overcoming the intense emotions of living with chronic pain
Remember, as I often say, pain is a landscape we’re moving through. It is not the totality of who we are. We only lose our way if we sit down and give up.
- Find someone to tell your pain story to –someone who will listen without trying to fix anything or assign blame. If there is no one you can trust to do that, talking to a pet is a surprisingly good second choice.
- Find creative ways to express your pain. Your physical and emotional pains can be expressed through art, writing, singing, dancing, or even howling.
- Find someone you can help, either through sharing your insights, becoming a companion, or being an understanding listener.
- Don’t isolate yourself. We all have days when we don’t want to go out. That’s understood. But human interaction is a basic need. Find ways to reach out and be with others, even if in brief amounts of time.
- Stay engaged with life. What did you used to love to do that you’re not doing now? How can you participate, if only for a short time or in the most minimal of ways? What new things can you learn about and participate in?
- Connect with the greater part of you that lives beyond this pain. This can be done through prayer, meditation, music, or other creative expressions with the intention of accessing the greater You.
- Re-connect with your dreams of the future. Create a dream that includes the person you are becoming through this journey with pain.
- Don’t stand still either on the inside or on the outside. This leads to a feeling of stagnation. Find a sense of movement, no matter how small: physical, emotional, creative, or spiritual.
- Be kind to yourself. Speak to yourself and to your body soothingly and with love.
As we travel along our path through chronic pain, let’s remember to be kinder and more compassionate toward our bodies and to our whole self, feeling what needs to be felt, expressing what needs to be expressed, and loving the parts of ourselves that are asking to be loved.
One of the most challenging situations for those of us in chronic pain is working with a doctor or another medical practitioner who is unable to see or understand the intensity of our pain. They may also feel that its longevity is either questionable, or somehow due to something we, as patients, are not doing right.Sometimes we are told to do things that are painful for us, and are not believed when we report that it hurts. Sometimes we are told that we simply can’t be in the pain...
One of the most challenging situations for those of us in chronic pain is working with a doctor or another medical practitioner who is unable to see or understand the intensity of our pain. They may also feel that its longevity is either questionable, or somehow due to something we, as patients, are not doing right.Sometimes we are told to do things that are painful for us, and are not believed when we report that it hurts. Sometimes we are told that we simply can’t be in the pain we’re in. Doctors have made a career of helping people in pain, yet when they invalidate our experiences, they inadvertently cause us even more pain. When No One Understands Your Chronic Pain
How does this happen? How do highly trained, and usually very caring, individuals end up causing more pain for the patients they are trying to cure?4 Ways It Can Go WrongThis can manifest in a number of ways:
1. A treatment or protocol isn’t working, or is causing more pain, but the doctor insists that we continue or try harder because they believe in the treatment more than in our feedback.
2. The doctor may have experience working with people in pain, but has never had to live with chronic pain, so he does not understand the difference between short-term pain (that usually responds readily to treatments) and long-term pain (which is a different beast altogether and multi-layered). They do not understand the side effects of chronic pain which can include loss of brain power, fatigue, spaciness, and sleep deprivation, so they simply don’t take these into account.
3. The doctor may not believe that our particular condition causes the level of pain we are in and works with us as if we have a different version of our condition, or a different condition altogether.
4. The doctor has a desire to help, but would rather believe that we are wrong than to admit they are unable to offer us a cure.
As a patient, this is very difficult to deal with. It makes us feel unheard, misunderstood, and belittled. Not to mention the fact that we may feel shamed for not healing as fast as we’re supposed to, or for not responding to treatment in the way everyone hopes we will.This is not to say that there aren’t doctors out there who listen to their patients. There certainly are caring, compassionate, and sensitive doctors who take note of what their patients report, while adjusting their treatments and recommendations accordingly. But, unfortunately, there are many who don’t listen, cut patients off when they’re trying to explain what’s going on, or discount what they do hear.
For doctors who fit into any of the above categories, unfortunately, the fact that the treatment they are offering isn’t working doesn’t always indicate to them that they need to find different ways of handling chronic pain. For some of them, it’s easier to blame the patient.What Can We Do About It?What can we, as patients, do?
It’s important to learn to speak up for ourselves. However, when we’re in pain, it can be very challenging to take a stand of any kind. We’re usually exhausted and operating on limited brainpower. Often it’s difficult to do anything more than barely stumble through a medical appointment. But I do feel that it is up to those of us who live with chronic pain to educate the medical establishment when we have the opportunity to do so.
I have written some talking points below to help you begin the conversation with your doctor, should the need arise.
You can also use my Statement for Practitioners on my website Resource Page as a basis for having a conversation or print it out and take it with you to appointments.
Here are some talking points you might use:
1. I respect you as an expert in your field. I ask you to respect me as an expert in how I am experiencing pain in my own body.
2. My direct experience is the most valid basis we have to assess how treatments are working or not working, and I ask you to be willing to listen to my feedback and take it into account.
3. When you insist that you know more about my experience of pain than I do, I feel belittled and invalidated.
4. If treatments do not work for me in the same way they do for the majority of your clients, it does not mean I am not trying hard enough. It does not give you a basis for discounting my experience. It means there is something new to learn here.
One thing that can be very helpful is to keep a pain diary, a record of the kind and level of pain you experience from day to day, to bring with you to medical appointments. A written record can go farther in validating your pain experience for you than verbal explanations and a detailed diary can seem more real and believable to your doctor. You can download a template for a pain diary from my Resource Page.
It’s too bad that those of us who are already in pain sometimes have to endure more pain, both physical and emotional, when we’re working with certain doctors. I wish it were not so. But, I believe, since some seem less well equipped to work with long-term pain, it may be up to us to educate them with our gentle, but insistent truth.
I’m always surprised when people ask me, are you still in pain? or are you in pain right now? Because, of course living with chronic pain is a 24/7 experience and I somehow expect them to remember that, but why would they?It's difficult for others to even begin to imagine how pervasive the experience of chronic pain actually is. They just can't comprehend it. And I guess that's understandable because, in a way, those of us living with pain every day live in a...
I’m always surprised when people ask me, are you still in pain? or are you in pain right now? Because, of course living with chronic pain is a 24/7 experience and I somehow expect them to remember that, but why would they?It's difficult for others to even begin to imagine how pervasive the experience of chronic pain actually is. They just can't comprehend it. And I guess that's understandable because, in a way, those of us living with pain every day live in a different world–a world dominated by it and by our response to it. When Chronic Pain Turns You Inside Out
With the best of intentions, others often compartmentalize our pain into a condition that we “have” (as if it were separate from us) or into an area of our body that is compromised. This might be useful sometimes for short-term conditions and short-term pain, but life in chronic pain, unfortunately, is not that straightforward.
If they wish to be of help, medical professionals, friends, coworkers and family need to know more about what we go through on a daily basis. Not to have a pity party, but to create a groundwork of understanding so that they can create better treatment plans, understand our limitations, and stop pushing for us to act normal.
They need to know that pain is not an isolated experience. It’s not neatly cordoned off into one area of our bodies. It affects our whole body, our mind, our emotions, and the way we feel about ourselves, life, and others.
Here’s a list of 15 ways to explain how pain affects you that may be useful in communicating your experience:
For some of you this list may seem depressing, but in talking with many people in pain, I’ve found that it’s often something of a relief to recognize, articulate, and acknowledge all these aspects of pain. Many times people have said to me, “Other people experience that too? I thought it was just me.” And they breathe a sigh of relief.
- I live inside a sphere of fog.
- It's like pain doesn't just stay in my body–I'm also sensitive to the space around me.
- I fatigue easily. Just being in pain is exhausting.
- Sometimes the simplest of tasks and activities wear me out.
- I sometimes feel like I have the flue and jet lag at the same time.
- My brain doesn't work well–sometimes I have blank spaces, and sometimes I just can't use my mind in a constructive way, as if it's offline.
- My short-term memory is sporadic.
- I have trouble focusing, in fact, trying to concentrate can make me feel worse..
- I'm always sleep deprived and often feel like a zombie.
- My pain travels and morphs–it's not always in the same place or of the same kind.
- I don't know how I'm going to feel on any given day.
- I have to find a way to live with hope while being repeatedly disappointed.
- Because of my pain, there is no certainty to my future, and that's scary.
- I feel like I have little or not control over my body or my life.
- I'm often on hyper alert and overwhelm easily.
My hope is that this article will help you more clearly express the extent of your experience of pain to those who need to know. I also hope that it will help you feel more validated and know that you are not alone. We all have our private experience of pain, of course, but on some level we are also all in this together.
The first several years of living with pain is a constant search for answers. What is going on? What caused the pain? How can I stop it? How can I heal? What am I doing wrong? After years of looking and looking for ways to end the pain in the world of physical treatments and pain relief, we can become discouraged and frustrated when no clear solutions appear. When everything we try either has little no discernible effect, or actually makes things worse, it seems like there...
The first several years of living with pain is a constant search for answers. What is going on? What caused the pain? How can I stop it? How can I heal? What am I doing wrong?
After years of looking and looking for ways to end the pain in the world of physical treatments and pain relief, we can become discouraged and frustrated when no clear solutions appear. When everything we try either has little no discernible effect, or actually makes things worse, it seems like there are no answers “out there”.The Inner World of Pain
Pain is a paradox to begin with. Something “out there” causes it - some situation, some bacterial or viral invasion. So, we naturally look for all the answers to pain on the outside.
But we experience pain “in here,” in our bodies, and we also experience it in our private inner worlds. It informs everything. How we see ourselves, how we feel about life, what dreams we give up and what we create. This pain that comes from the outside may not respond to treatments applied from the outside and affects us hugely on the inside, almost forcing us to go inward to look for a different level of answers.
When we do that, it’s important to avoid the negative inner path, which can look like this:
- What’s wrong with me?
- Why can’t I stop this?
- How did I let this happen?
- Why is this happening now? To me?
Most negative questions are versions of the first one: what’s wrong with me? With these questions our self-doubt grows, and we lose confidence in ourselves and in our ability to heal. We can also lose our trust in who we are and our trust in life.
Asking Different Questions
Going within in a more healthy way might be to ask these kinds of questions:
- How is pain asking me to change? Who is it asking me to become?
- What messages does it bring?
- How can I find useful ways to communicate with it?
- What resources lie within me that I may never have had to tap before?
- How can I maintain a sense of my whole self in the midst of this pain?
These questions aren’t easy to answer, but they tend to lead to more positive approaches to living with pain than the first set. If we let pain turn us inside out, so to speak, we may discover that pursuing answers to these questions can release some of the stress and anxiety that comes with living in pain. This can promote greater inner peace and well being, which may actually bring some reduction in our overall levels of pain.
So, when we despair of finding answers “out there”, we might try turning our attention inward to tap our own personal wells of inner wisdom.
, John William Godward (Wikimedia Commons)