When I published my post earlier about the ways we keep our pain silent, one of the patient advocates I deeply admire responded to my post. And what she said reflects a truth I often hear in the office. It still hurt to hear.
Women of Teal @womenofteal
There are those that think we are complaining because you can’t “see” pain and other side effects but still disabling 4 us.
When did our attitude shift so that telling the truth about painful experiences or pain itself is identified as complaining? How did the “positive attitude” become a mandate rather than a goal? Listen, I’m a psychologist. I am a brain science geek. I truly believe that finding and fully experiencing the moments of joy and comfort in our lives is important. I use gratitude journals and happy moments practice as therapy homework assignments. I am passionate about the possibility of people moving toward more brain and body health. I understand that sometimes we have to challenge ourselves to move and reach and risk–even in the face of pain.
But here’s the thing. While I believe that pain does not have to be the complete definition of our existence, I understand that pain is real. I understand that fatigue, depression, pain, and anxiety are not going to be banished by our will alone.
The expectation that people who are coping with chronic illness, of any stripe, should never talk about the hard parts of their life experience is just absurd. Chronic illness is a constant companion. If you are fortunate, your chronic illness may be well managed by lifestyle choices and medication. But even “well-managed” illnesses take a toll. So many of my clients are choosing between the progression of their illness or taking a medication that has significant negative side effects. And when you live with chronic illness, you can never be certain that you won’t have a “crash” day.
It does not support health to dismiss people’s experiences as “complaining.” It does not support health to diminish someone’s truth because it does not match your expectation of how things go. It does not support health to buy into healthy privilege and the assertion that health is a manifestation of virtue.
It is expectations like this, that people should suffer in silence in order to deserve our support, that further the many layers of stigma surrounding physical and mental illness.
So let’s talk about how we can create moments–in health care and in society–where we truly listen to the experiences people are having. When we trust that they are describing the truth of their experience. And where we choose to offer compassion instead of judgment.
When it comes to your health–invisible experiences are NOT imaginary.
There is a wonderful online movement based on the work of Christine Miserandino of the ButYouDon’tLookSick Foundation. In an effort to explain the challenge of living with fibromyalgia, she wrote an essay that she called “The Spoon Theory.” Essentially, the theory suggests that we each have a finite number of emotional & energetic “spoons” to get through our day. Some days, it takes every single spoon we’ve got to get out of bed. Other days we have to ration our spoons to participate in something important.
The reality behind the spoon theory, and the #spoonie movement that has grown out of it, is that a majority of the most painful and debilitating illnesses that we face (Crohn’s, lupus, depression, diabetes, cancer, MS, anxiety, & RA–just to name a few) don’t have any visible signs. With the right makeup, clothes, and effort, a person with intense physical & emotional pain can sometimes look “just fine.” Looking just fine doesn’t mean that we feel just fine. In fact, that “just fine” face may hide a world of pain and suffering.
Since we live in a society where we are supposed to ignore our pain, many of us have bought into the story that we should feel fine. That our pain is a sign of our weakness. That if we were strong enough, courageous enough, hard-working enough, virtuous enough, we would be able to do all the things that a healthy person can do, in the same time that a healthy person could do it. In short, we have bought into the story that maybe our invisible pain isn’t real pain. We begin to feel that maybe our invisible pain is “just in our heads” or a sign of our failure.
This makes me so angry. Unless you have a broken bone with a cast, a wheelchair or another dramatic physical marker like hair loss, most illnesses don’t have a visible indicator. There isn’t a pain rating scale flashing above your head. Fatigue and depression don’t show on your face. Almost all pain and suffering is invisible. AND it is real.
People who are struggling to get through a “normal” day because of pain or other invisible health issues do not need to have their struggle questioned or discounted. That kind of behavior is healthy privilege in action. So, let me state this clearly.
Invisible suffering is real suffering.
Instead of questioning the validity of people’s pain, let’s work on creating support systems that help them move through pain in healthy ways.
At first glance, the American celebration of Veteran’s Day may not seem to have much in common with the Hindu celebration of Diwali. But, as Diwali, a celebration of light triumphing over darkness, overlaps with Veteran’s Day this year, I have been thinking about the fact that many people who join the military do so in order to stand against darkness in the world (the cost of that is a story for another day). I see these two celebrations, which seem so distant from one another on the surface, and I see the connecting thread of choosing to hold a light against the darkness.
I believe that each of us has the choice and the chance to hold our light against the darkness. That light may be in the small choices that we make. We can offer a smile to a stranger, or hold a door. We can remember that everyone carries their own burden and choose to be kind.
I know that many of my clients struggle with the idea of holding a light for others, because they feel that they are barely holding on to their own light–or because others have actively pushed them towards darkness. The idea of sharing our light when we feel as though it is scarce is a challenging one. It requires us to trust that light shared isn’t light lost. And when you feel kicked around–by your health, or your losses, or relationship pains–trust of any sort is a big ask.
Here is the truth that I have experienced. Sharing light has never left me in the dark. In those moments when I felt the most broken, I shared my brokenness. That was all I had to share, but it connected for others. Our pain has a light too–when we share it, others can see and know that they are not alone.
So, today, I am inviting you to share your light. It might be little and broken, but you have light. Your light makes a difference. And our lights together can push back the darkness.
As I wrote yesterday’s post, about the fact that health is not a virtue, I realized that I am pretty fired up about the stigma and shaming that many of my clients (and so many of the folks that I have met in various health communities) are facing. It is a real, daily, painful struggle. And this shaming of our experiences means that we are not honest with ourselves.
I have lost count of the number of times that I have had someone tell me that they truly believe their illness–or their pain, or their anxiety–is a result of their own personal weakness. Worse than that, we have received this message–that our pain is weakness–from people who we should be able to trust for support. We’ve heard it from health care providers. We’ve heard it from family members. We’ve heard it from friends or supervisors. And maybe most painfully, we have heard it from ourselves.
I’m guessing you have been in this struggle too. Maybe you aren’t facing depression, or heart disease. Maybe you aren’t dealing with diabetes or anxiety. Maybe you are one of the lucky ones whose physical and mental health are pretty solid. Even if you are, I think you can relate. Think about the last time you were sick–the flu, a nasty cold, a seasonal bug. Did you really let yourself get the full amount of rest and recovery that you needed? Did you head to bed and stay there until your body was on the way to health again? Or did you push yourself–back to work, to household chores, to family responsibilities? If you did push yourself (which is the most common answer), take a moment to ask yourself why that is. For some of us, the answer is that we have limited sick time, or limited support–and we feel that other responsibilities beat our own recovery. For others, it is that we want to “tough it out.” We want to prove that we can be tougher than the germs.
And I think that we want to be tougher than the germs because we believe that we will be judged for taking the time to recover properly. We have drunk the Kool-Aid, and we believe on some level that health is a virtue–even though it is not. But if we follow that logic, and health is a virtue, than our illness, whether it’s a summer cold or cancer, must be blameworthy.
So imagine the relentless silencing that folks with chronic illness face. The pressure to “show healthy” is intense. Maybe we need to think about the possibility that the shaming and blame stories about our pain are contributing to our pain. Maybe it is time to break the silence. Maybe, if pain or depression or fatigue prevent us from participating in our daily life, we can practice saying that–to ourselves at first, and then to others.
I invite you to start by sharing your pain story with me here in the comments. Please let me know if you need additional support.
I think it is safe to say that my most popular posts since I began writing were the series I put together about what health stigma and healthy privilege are–and how seriously they affect us. I still stand by the ideas I shared in that series. Recently, as I have talked to clients, and I have participated in conversations online, I have realized that there is an issue that is directly linked to healthy privilege and health stigma that I didn’t explicitly address in my earlier posts. And it is this:
Having the privilege of health is not reflective of your virtue as a person or the value of your choices.
Let me be clear about this. I certainly believe that we have the ability to make healthy choices. We can strive for good food, rest, and movement. We can choose relationships that support us instead of relationships that tear us down. We can seek appropriate physical and mental health care to be sure that we stay as healthy as possible. We can make healthy choices. But those healthy choices do not guarantee our health.
We live in a culture that is very focused on individual control. We want to believe that good choices lead to good outcomes. And that means that if you struggle with health challenges–emotional or physical–you must not have made good health choices. Right?
This unspoken idea that good health is a reward for healthy choices is one of the pillars that supports the ongoing stigma of health challenges. The belief that good health is the result of good choices is a reason that so many people feel blamed or shamed for the illnesses they live through.
The truth is, that no one is guaranteed good health. Athletes in peak condition die of undetected heart conditions. People who have eaten perfectly their whole lives get cancer. People with great mental attitudes struggle with depression or anxiety. People with strong work ethics get multiple sclerosis or rheumatoid arthritis. Making healthy choices certainly improves our odds of experiencing health in life. But we don’t get a guarantee.
We would like a guarantee. We want to feel that good is rewarded. We want to believe that our choices ultimately control our experiences. But we live in a world where our genes, our environment, and sometimes, just our spin of the luck wheel determine our experience. And I think that our society sometimes takes that wish for a guarantee and uses it to shame and blame people who are facing health challenges. Because if other people can make healthy choices and still face illness, then we might be at risk for illness too. Because we want to deny the fact that sometimes good health is good luck.
Since this lightbulb went on, I have seen this attitude in so many places. And I think that we need to call it out. Health is a goal. It is a gift. But health is not a virtue.
Let’s have that conversation.
Oh–and just to have some outside perspective, check out this long list of “Virtues of Moral Personhood (note that health isn’t on there anywhere):”
I run into a dilemma with many of my clients. Maybe it’s a dilemma you have faced too. Here’s how this goes. I know, from current research (piles of it, by the way), that one of the most effective things my clients can do to cope with and reduce anxiety, stress, or depression is to participate in some form of regular exercise.
And when I ask about exercise, I get a range of responses. Some of my clients have a regular exercise that they do and enjoy. Some had an exercise that they enjoyed before they got sick, or lost their job, or went through whatever struggle has brought them to me. Some were traumatized by grade school gym class, and view exercise as a thinly-veiled form of torture. Some just see it as another chore to try to cram into their already-overflowing schedules.
So the idea of exercising is one that is often connected to a series of complicated emotions. Three of the big emotions that get linked to exercise for many folks are guilt, fear, and grief. Let’s unpack those a little bit more. Guilt is one of the most common responses to the idea of exercising–nearly everyone has a “should” about their own exercise experience. Many of us have also had moments of feeling physically inadequate or shamed, and so exercise has taken on a “monster under the bed” quality. We know we are supposed to do it, but we are pretty sure it will hurt, or we won’t do it “right.” And, some of us have had wonderful relationships with exercise. Then an injury, illness, or simply life getting crazy got in the way of that relationship, and now we think of exercise with an emphasis on what used to be–and that reminds us of a painful loss.
In the last year or so, I have encountered an idea supported by several physical therapists I respect. And that is the idea of moving away from trying to exercise, and moving towards a goal of joyful movement. This means that we start to think about the fact that our bodies are designed to be in motion. That motion doesn’t need to fit our traditional model of “exercising.” That motion doesn’t have to happen at a gym. That motion doesn’t require that you “feel the burn” or break a sweat. Instead, you might dance in your kitchen (this is a favorite of mine), or play with your dog, or take a turn on a swing set. That motion might in fact help you feel more comfortable in your body instead of as though your body is failing.
So, I’d like to challenge you to break out your creative thinking and find some ways to move joyfully through your life today. Feel like sharing? I would love that. Need some help finding your joyful movement? We can talk about that.