Posts Tagged ‘illness’

Truth or Complaining?

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.

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.

Silencing Pain

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.

Health is NOT a Virtue

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?

WRONG.

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):”

Is it Time for a Break?

One of my best mental health breaks is getting outside.

Next Monday, August 24th, I’ll be joining the #BCSM (Breast Cancer and Social Media) community again for their Monday night tweet chat.  Our topic is going to be “mental health breaks.”  I’ve been kicking this idea around in my head for a while, and one of the things that has come up for me is that many of the clients I work with in the office, as well as people that I interact with in health communities really struggle with the idea of taking a break.

Living with cancer can be a consuming experience.  It can feel like a full-time job to manage early treatment, and a very different job to cope with ongoing fatigue, chemobrain, and other long-term treatment effects.  In addition to that, cancer and other illness can be like an earthquake in your relationships and work life.  It makes a lot of sense that trying to create mental health breaks can feel unattainable or like a chore.

And all of that is why making space for breaks matters.  When your body has taken huge hits, and so much of your experience has been wrenched out of your control, it becomes really important to focus on what you can control.  And investments (big and small) in your overall mental health are definitely under your control.

So let’s look at some of the reasons we aren’t getting these mental health breaks.

Reason 1: I don’t have time to do that stuff.

Baloney.  Mental health breaks don’t need to be a week-long vacation. or an hour of meditation.  Not that either of those are bad.  You can give yourself a mental break in under one minute.  Try focusing for 10-12 seconds on a sensation of comfort, connection, or pleasure–the taste of your coffee, the sound of kids laughing, the warmth of a favorite blanket.  For that 10-12 seconds, really immerse yourself in how good that moment feels. Try to identify how you are seeing, hearing, smelling, tasting, or feeling that goodness. This is an exercise that neuroscientist Rick Hanson calls “taking in the good.”

Reason 2:  Treatment has taken up so much of my time, energy, money, etc that I don’t have any resources left over to take care of my mental health.

It can be easy to think of mental health & self-care as luxury items, but they aren’t.  Not only are they absolutely essential to our overall health, but you can take a break for your mental health in ways that don’t take up more of your resources.  You can change your scenery (get outside, get to a lovely indoor space, add a plant to your desk or bedroom).  You can move around–even some gentle stretches can begin to release endorphins & lift your mood.  You can breathe–3-5 deep breaths are enough to reset a stressed out-brain.

Reason 3:  It’s not fair to my spouse/kids/family/friends/employer if I focus on me. Isn’t that selfish?

Nope. No way. Not at all. Not even a little. Self-care is not selfish.  Focusing on mental health actually helps you be a better partner, parent, friend or co-worker.  Just think about how you act and feel when you are exhausted or upset.  Is it your best self? Can you make good judgments and extend compassion? I can’t.  I need to have a basic foundation of rest, self-care, and mental health time outs, so that I can be the best person possible in my relationships.  Taking mental health breaks helps me (and you) to be the person that others count on.  Without those breaks, we are all more brittle and likely to, well, break.

This is just a tiny sampling of how you can challenge the blocks to your own mental health breaks.  Want more? Join us on Monday night for the #BCSM Community tweet chat.

 

Step to the Side

So many of my clients are facing really big challenges. Physical challenges, relationship challenges, emotional challenges, challenges of anxiety and more. And it’s not unusual for me to hear them talk about about feeling overwhelmed. Trying to manage their challenges has got them worn out. They have more going on than they can juggle and they are not sure what to do next. And because their difficulties aren’t taking a break, they don’t feel as though they ever get a break. Even when there isn’t a current crisis, it feels like one is lurking just around they corner, and they feel like they need to remain constantly on guard.

Does that sound familiar?

If it does, maybe this tool will help you too.

When I am sitting with a client who is feeling completely bombarded by difficult situations, anxious thoughts, etc., I invite them to take a few moments to practice this visualization with me. So I’ll invite you to do the same thing.

Step To The Side:

First, take a few moments to sit as comfortably as you can. Try to be sure that your body is well supported by the chair or sofa you are on. Then, allow your breathing to become even and steady, bringing a consistent flow of oxygen into your body and brain.

When you are feeling comfortable and supported, when your breathing is calm and even, imagine a river. This is a pretty large river, large enough to gain some speed as it moves along. Now, imagine that, as you round a curve in the river you see a waterfall. The waterfall isn’t enormous, but it is large enough for a grown person to stand underneath it.

Now imagine that you are standing in the center of the waterfall. The full force of the river is crashing down on and around you. It is loud, and overwhelming. In fact, it feels as though it could knock you over and sweep you downstream. The middle of the waterfall represents today in your life. Staying there can be scary.

You can’t stop the river from flowing.

You can’t stop the water from crashing over the falls.

But you can step to the side of the river.

You can observe the falls without being in the center, at least right now. You can know that the difficulty you face is real, without sitting in the middle of it. You can step to the side and enjoy some room to breathe, to feel supported, to take a break.

This isn’t about denying the difficulties you face. Instead, stepping to the side allows you to gather your strength for re-entering whatever challenge your river of life brings you.

Try It On

I would guess that you, like my clients, have had moments where the realities of your life feel like that river trying to sweep you away. So, I’m inviting you to step to the side today. Have you had a moment when you were able to step to the side? Please feel free to share in the comments. Need some help getting there? Just click that button on the right hand side.

Shift Perspective

IMG_3217Back in October, I wrote about the fun we had re-discovering the wonder in everyday items. For today’s post, I’m using another image from the City Museum of St. Louis. This particular photo does a great job of illustrating an idea that I often talk about with my clients. It is important to look at our situations from different angles. When we are facing stress, hurt, loss, or other challenges, it is really easy to get stuck in our assessment of a situation. We begin with an assumption about what is happening, and that assumption tends to get stronger over time.

Our assumptions matter. They matter because they shape the possibilities we see. Our perspective affects our sense of who we are in the world. Our view of the world determines how we define problems, and what solutions we see.

For example, the picture above looks like a collection of rusty junk. Admittedly, it’s rusty junk that has been laid out in a tidy way, but it’s rusty junk, nonetheless. And as we consider rusty junk, the appropriate response is usually to pitch it in the trash.

But, at the City Museum, the rusty junk is actually part of this:

IMG_3216 It’s a fantastical tree structure, including a musical dragon. The artists at the City Museum have been able to look at rusty junk, the things that the rest of us would ignore or pitch, and envision something amazing. It’s a clear reminder that things can be more than they seem.

I love this.

I am so excited when I find reminders that we aren’t stuck with the way things initially appear. We aren’t trapped with the original presentation. Even in the face of illness, or pain, or loss–we retain the ability to change our perspective.

When we change our perspective, we change our possibilities. We create the chance to change our experience. To see the world in new ways, to have new experiences. And that’s where we gain some power in life. Because pain, illness and loss happen to all of us. They are unavoidable. But being paralyzed by the pain, illness and loss is not unavoidable.

So, what rusty junk in your life can you transform into musical dragon trees? What shifts in perspective might open up new possibilities for you? Please feel free to share in the comments.

And if you need help shifting perspective, you know where to find me.

Patients, Caregivers, and Anger

A while back, I wrote a post about the fact that acknowledging our sadness is an important part of self-care. And that post seemed to resonate. Last night, during a #BCSM (Breast Cancer and Social Media) tweet chat about caregiving and breast cancer, the topic of anger came up several times.

One question that I saw in the conversation was how to handle when a patient or a caregiver gets angry. And I think this is critical. Because angry happens. And angry is an emotion that can have an important purpose when we’re emotionally healthy. Anger was intended to help us realize when something feels wrong, and have the energy to respond to it.

And certainly dealing with any serious illness means that something is wrong. Even if your treatment is going great, even if your chronic condition is well managed, you still have a level of awareness, restrictions and daily requirements that wouldn’t be present if your body was fully healthy. You’ve moved out of the realm of healthy privilege. Managing a serious illness is expensive, time-consuming, and often can make daily life feel like a huge challenge.

But sometimes, angry means that we are also feeling sad, frustrated, stuck, isolated, lonely, scared, or annoyed. Because anger is an active emotion, it can feel more comfortable than feelings that seem to be forced upon you.

That makes it incredibly important that you spend some quality time and sort out how you are really feeling, especially in a situation where you are a patient or a caregiver. Generally, no one signs up for a caregiver role unless you already have a deep and caring relationship with your patient, so I’m going to assume that these are relationships that matter to you. If you are feeling anger, it is great to take a few moments to yourself and determine the true cause of the anger. Do you really care that much about where the dirty dishes sit? Or is today a day that you are overwhelmed by your role? Because, to tell you the truth, neither the patient or the caregiver has it easy.

It can help to use a journal, or a therapist, or a safe friend to process your feelings. Once you feel like you understand the root of your upset, then you can sit with your patient or caregiver and talk it through. These are never easy conversations, but they matter a great deal. Reminding one another that you both care, and giving each other the compassionate benefit of the doubt during a tough conversation can go a long way. Being willing to talk through anger can help build a stronger foundation for the ongoing relationship.

Need some more ideas on healthy coping with anger? Well, it turns out that I wrote a post about that last year, which you can find right here.

And, of course, you can always share your suggestions for coping in the comments, or reach out to me directly for more support.

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