Updated: May 4, 2020
This is the first of a multi-part series
Part One: Illness and Pain
The language that we use to talk about our relationships with our human bodies is adversarial, militaristic, violent. We battle and conquer illness. We triumph over disease. We kill pain or we push through it. We suppress symptoms. Language has power. It determines how we think about and relate to our world. There are real and devastating consequences to relating to our bodies as objects that we need to conquer, control, fix.
As I wrote in an earlier piece, struggle creates a stress response in the body. In fight or flight mode, we don’t heal. Our immune systems are suppressed and tissue repair slows down. Hormones get out of balance. Digestion slows or gets dysregulated. Sleep suffers. Mutant cells grow.
But there is an emotional cost as well. If health is a war, what happens to those who lose? I’m not talking about death, which is something we accept as inevitable. I’m talking about those who fail to be “healthy,” whose bodies don’t conform to norms of ability, size or shape. Losers are shamed. The practice is as old as war itself – pride to the victors, shame and punishment to the losers. The cost of our “war on bodies” is that most of us live with a huge burden of body shame.
This essay is about coming to peace with physical pain in my body. The next will look at coming to peace with the appearance of my body.
For the past 30 years, on and off, I have had chronic back pain, fibromyalgia, hypothyroidism, digestive problems, depression, and fatigue. It’s hard for me even to write this. I am feeling fear that you, dear reader, will think less of me, will pull away, eyes averted. I feel shame – the shame of one who has lost the battle. For the past seven years as a health coach, I have worked with folks with chronic illnesses. They all echo this sense of failure shame – that somehow, they are at least partly responsible for their ongoing symptoms. That they did not have what it takes to overcome, to conquer, to win.
I have fought these health challenges on every battlefield there is. To eliminate back pain I have had four spinal surgeries. The last one was a 3-level spinal fusion that required three months of bed rest and several years of recovery. I’ve done countless rounds of physical therapy, aquatherapy, exercise, yoga, chiropractic care, massage, acupuncture, energy work, hypnotherapy, heat, ice, essential oils, creams, gels, patches. I bought a $700 Biomat.
I’ve tried more medications than I can count. I’ve found a couple that help and I will most likely be on them for life. They are drugs developed to treat depression, which also help with chronic pain. As anyone who has had chronic pain can attest, it is profoundly depressing. So the antidepressant effect of these medications is also essential to my health. It’s telling that I even feel compelled to explain that. Taking meds for a psychiatric illness confers shame in a way that meds for a physical illness do not. My reality – which a wise psychiatrist helped me to see 30 years ago – is that chronic pain and depression are inseparable – one continuously reinforcing the other in a vicious cycle. When I stopped trying to figure out “which came first,” or “which caused which” it was a profound relief. And yet I still feel shame that I take Pamelor and Prozac. So do millions of others.
Over the years I have tried to stop them multiple times, only to be thrown into a severe pain flare. I distinctly remember one episode in my late 20s. I, quite literally, could not get up off the floor. My mind was telling my body to move, but it wouldn’t respond. I was engulfed in pain and I felt utterly hopeless. I was pursuing a PhD at the time and I LOVED what I was doing. It was the most amazing intellectual experience I had ever had. But it hurt to sit – and that’s what PhD students do. They sit in class, to read, and to write. All day, every day. As I lay on the floor that day I didn’t see how I could possibly ever succeed. My husband came down the floor, took my hand, looked into my eyes and said, “Dana, you need to go back on your meds.”
So I did. But not until I almost died. Shame – the shame of defeat - would have been the cause of death. If wellness is war, a strong soldier should be able to prevail “on her own.” If we were really committed, we would heal. If we don’t, we remain broken. To “depend” on medications makes us feel less-than, especially psychiatric medications.
In the book Untamed, Glennon Doyle describes her experience with anxiety and depression, and the medication that has helped her. “Take your damn meds,” she writes. Going off of a medication that is helping you, she explains, is like standing in the rain with an umbrella and saying to yourself, “huh, look at that, I’m dry. I guess I don’t need this umbrella after all.” You deserve to live a full and happy life, even if that means you need to hold that umbrella forever. “Take your damn meds.”
Despite all of the interventions, I still have pain every single day. Seven years ago I began training and then practicing in functional and integrative medicine as a health coach. This sent me down a whole other rabbit hole in search of relief from pain and other symptoms. I eliminated foods, having been told that certain foods promoted inflammation. I am a very smart woman with a PhD who generally doesn’t accept anything as true without seeing the evidence for myself. But on this, I trusted the “experts” I was studying with and learning from. I did not look for data. Gluten, dairy, grains, sugar, processed food, hydrogenated oils – all these foods were said to increase inflammation, and therefore pain, in our bodies.
So for six years I practiced crazy dietary gymnastics in an effort to find the perfect diet that would eliminate the pain. By the end I was eating an extremely restrictive diet of organic meats and vegetables, and nuts and seeds. I spent a fortune on special oils, flours, powders, bars, and extremely expensive specialty foods (if I never see another chia seed, it will be too soon). I missed countless opportunities to eat with pleasure, dine with friends, and enjoy birthday parties. I never did it perfectly – I have a rebellious streak and a wicked sweet tooth – but I drove myself crazy every time I “cheated.” I suffered when I did it right and I suffered when I did it wrong. In hindsight, it was insane. At the time it felt like virtue itself. Just ask my family (I am so sorry you all!)
I also worked to “detoxify” my body, hoping that would help. Again, on faith. I had no research or data to show me that this would help. I changed all my personal care and cleaning products, avoided chemicals, preservatives and additives, took herbs and supplements, did coffee enemas. I spent a ton of money and time. I told other people it was helping. I recommended it to others.(Again, I am so sorry you all).
Did the healthism I practiced all those years have any effect? It’s hard to say. Chronic symptoms come and go – it is the nature of chronic illness. Our bodies are wildly complex biochemical, energetic, mental, and emotional organisms. Countless variables are at play in any given moment. Trying to figure out WHY symptoms flare is like searching for a needle in a haystack while also beating yourself with a stick. It’s fruitless and stressful and causes endless unnecessary self-recrimination. I was stuck on that train for six years.
Then there is the power of belief, which would require a whole other essay (A fabulous book on this is The Biology of Belief by Bruce Lipton). Let’s say I go gluten-free and I think my back hurts less. There is at least a 30% chance – according to the logic the governs clinical drug trials – that it’s a placebo effect. The opposite is also true – there is a “nocebo” effect. If you are given an inert substance and told it will cause a headache, more likely than not you will get a headache.
Finally, so-called lifestyle medicine is not harmless. It is not without side effects. Adherence to strict protocols and regimens is stressful, expensive and time-consuming. That stress detracts from our well-being, even if the behavior itself is somehow helpful (which is impossible to know, that’s my point). And when we try something – like a restrictive diet to cope with symptoms – and we can’t stick to it, we double down on ourselves with the shame of failure. Research on restrictive diets shows that they are almost universally unsustainable over the long term. Most of us also know this from our own experience. It’s not about will power – it’s about the instinct to eat to survive. Thus we are literally being set up to fail, to shame ourselves, and to end up sicker.
Along the way on this crazy journey, I have learned some things that are deeply and profoundly true. The essence of what I have learned, and what I now teach and coach others to understand, is that listening to my body, rather than fighting it, is the path to wellness.
Symptoms are not the “enemy.” They are essential messages. Without them our species would never have evolved. When you put your hand on a stove and feel burning, you pull your hand away instinctively. When you break your leg, the pain is there to make you stop walking on it and let it heal.
Most of the time, an unpleasant symptom is telling us to stop -- to slow down, to rest, to stop doing something that is causing harm. But we have been conditioned to do the opposite. We push our bodies beyond their natural limits. The body starts to whisper with discomfort. We ignore it, or medicate it, or push through it. But it wants our attention, so it escalates. Eventually it is screaming. We start throwing things at it left and right – drugs, surgery, and other treatments. But we don’t stop to actually LISTEN. What does this body want? What does it need? What do my soul and spirit need? I don’t think the real answer is in a bottle. Pain is not an ibuprofen deficiency.
The idea that we can control discomfort, pain, illness, and death is a profound example of human hubris. It is also a great cause of suffering. The great mindfulness teacher Joseph Goldstein says that the answer to the question “why do I suffer” is: “because I was born.” To be in a human body is, by the laws of nature, to experience discomfort, pain, illness, injury and eventually death. Am I saying we should not intervene when science provides antidotes? No, of course not. But I am saying that the idea of war – that we win or lose, conquer or succumb – causes more harm than good. It denies that we are integrated beings – mind, body and soul. It suggests that somehow our bodies are separate from “us,” that they are objects to be manipulated into optimal shape. It robs us of peace – the peace that comes from accepting what we cannot control. Should we control what we can? Absolutely. But we must cultivate the wisdom to know the difference.
Over 30 years of living with chronic pain, and seven years of working with others, what have I seen that repeatedly and reliably promotes healing? Acceptance.
Acceptance is NOT giving up. I am going to say that again. Acceptance is not giving up. I will continue to do everything I can to feel my best. I will take the steps I can. And, I will understand that my control is limited. I will accept what I cannot control and I will accept what I do not know.
Acceptance IS taking care. It is respecting my limits. It is letting go of cultural and familial standards of “productivity,” “worth,” and “accomplishment.” It is rest, gentle movement, gratitude and self-compassion practices, deep breaths, hugs, reaching out, writing and sharing what is true.
Acceptance is a practice. It is counter-cultural and thus is does not take hold in our systems easily. I have learned to accept, then forgotten, then learned again and forgotten again countless times over the course of my life. It is a muscle that starts out weak and fragile but over time, with consistency, can grow stronger. Each time I remember again, each time I realize that I’ve been in battle and denial and suppression mode, it’s like waking up. My body starts to unclench.
Regret and remorse come knocking. “Why did it take you so long to remember? You KNOW this.” “Because,” I answer, “I wanted to believe I had finally overcome. I wanted that with all my heart – to believe I could soar into my greatest potential, unencumbered by a body calling STOP. I wanted to be free.” I acknowledge and then let go of regret and remorse. “Thanks for the reminder, but I’ve got this.”
Then there is grief and it is in grief that I finally melt. The energy of grief is still. We are broken open. We are soft. There’s no more resistance, tension, force. We exhale. It gives the body a break.
Finally – and essentially - there is compassion. Without compassion there can be no healing. Compassion for the physical suffering. Compassion for the losses. Compassion for the aspirations I must release. Compassion for all beings who experience pain and unease.
It's not a one and done and it's not DIY. I have had a huge amount of teaching, guidance, support, and reinforcement. It's still a work-in-progress. Learn, forget, remember, repeat. The spiral reaches upward though. And I learn more each time I have the honor of guiding another person through. That's why I do this work and share these words.
Please reach out if this resonates: firstname.lastname@example.org.
Please stay tuned! In the next installments I will explore the costs of the struggle with appearance, weight, aging. I will then share in detail that tools and practices --
clear seeing, non-judgment, compassion for self and others - that are the only reliable path to peace.