A Permission Slip for Whatever You Need

Life with PFIC is hard. This is true whether you are a patient, a family member, or a friend. When life’s challenges feel overwhelming, we humans tend to default to a handful of fairly predictable but rather unhelpful responses. We might ruminate, thinking obsessively about the source of our pain. We might catastrophize, imagining worst case future scenarios. We might blame ourselves or beat ourselves up for not handling our problems perfectly. Perhaps we go into hyperdrive, attempting to control every detail of our lives. Or maybe we shut down. None of these responses are especially helpful in the long run, but all of them are completely normal.

The suffering that is directly caused by PFIC—for example, the itch, the struggle to pay down medical bills, the stress of hospital stays, and the pain of invasive treatments—is what psychologists sometimes refer to as clean pain. It’s the hand that you’ve been dealt and as such, is largely beyond your control. It’s the pain that anyone would experience in your circumstances.

We humans have big, amazing brains with powerful problem-solving capacities. This is great—except that we sometimes use our incredible intellects in ways that cause us more suffering. The additional suffering that we experience as a result of our thoughts, beliefs, and behaviors is called dirty pain. The miserable sensation of itch is clean pain. The belief that “I can’t bear this for another second” and the feelings of despair that follow on the coattails of such a belief are an example of dirty pain. The loss and grief of giving up a career or hobby that you love because your child needs more of your time and energy is clean pain. (Clean pain can be big pain!) The belief that “This is so unfair” or “My hopes of happiness are ruined” is dirty pain.

‘Dirty’ might sound like a pejorative label. We all experience dirty pain, though. When you notice that some of your pain isn’t strictly necessary, this is not a reason to beat yourself up. Quite the opposite—it can be a reason to celebrate! If your pain is ‘dirty’ or unnecessary, then you can choose to set it down. Will you accomplish this all at once? Probably not. Is it something that you can learn to do? Absolutely.    

Much of our dirty pain is tied to our failure to give ourselves permission to honor our own needs. As you read through the list below, notice if some of these ‘permission slips’ trigger either a feeling of relief or a feeling of resistance in you. Either of those could be an indication that you’ve landed in a patch of dirty pain—a place where, by giving yourself permission to think or feel or do things differently, you might be able to set down a piece of your suffering.

  • You have permission to feel the full range of your emotions. You have permission to grieve, permission to rage, permission to laugh, permission to dance, and permission to cry.
  • You have permission to feel numb. You have permission to just go through the motions. You have permission to be in survival mode. You won’t be in this place forever, but if it’s where you are now, then you have permission to be there. 
  • You have permission to feel overwhelmed. And whether or not you feel overwhelmed, you have permission to say “no” to anything that doesn’t feel like a resounding “yes.” You have permission to turn down obligations and opportunities. You have permission to let things slide from your too-full plate.
  • You have permission to ask for help, and you have permission to be choosy about who’s help you want and trust.
  • You have permission to make mistakes—lots of them! You have permission to be gentle with yourself when you do. You have permission to not be at your best.
  • You have permission to not know the answers. You have permission to not need to know the answers.
  • You have permission to long for whatever you long for. You have permission to grieve whatever you are grieving. You have permission to claim and lean into joy every time the opportunity arises.
  • You have permission to set down the thoughts and beliefs that aren’t serving you.
  • You have permission to write your own permission slips.

On a personal and somewhat ironic note, I found this blog post difficult to write. I started, stopped, and scrapped my efforts more than once. I began feeling frustrated with myself for not just getting it done. Then I came to the realization that I was demanding perfection of myself. I was creating my own suffering by asking myself for too much. So I gave myself permission to write a just okay blog post rather than a great one.

 I gave myself permission to make mistakes. Once I did this, the writing flowed, and the process became enjoyable. When we watch for them, these permission slip moments occur often—moments in which by simply allowing ourselves this or that shift, we can reduce our stress and suffering and increase our ease and happiness. PFIC serves up a hefty dose of clean pain. You have permission to lay down whatever dirty pain is accumulating on top of it.  

Stress Reduction in 60 Seconds

If you attended or listened to the recent (and wonderful!) Rare and Resilient Webinar Series by Caitlin Schneider, then you’ve likely given some thought to the mind-body connection and the ways in which stress impacts everything from the severity of pruritus to our level of life satisfaction. In the first two installments of the series, Caitlin details what is known about the relationship between stress and itch, and she offers several tools that can be used to decrease stress for both patients and their caregivers. One of these tools is mindfulness. Before we explore this in greater depth, it’s worth pausing for a moment to consider why reducing caregiver stress is just as important as reducing stress for a PFIC patient. (If you are a PFIC patient yourself, feel free to skip the next two paragraphs!)

Imagine that you are attending a small gathering in a friend’s home. She has spent hours preparing and is determined for everything to go well. She is so determined, in fact, that she is unable to enjoy the evening herself. She flutters about, frantically refilling platters, mixing drinks, and busing dishes. She cannot relax until she is certain that everyone else is having a wonderful time—but that certainty proves elusive. Stress ripples from her body in almost visible waves, but she refuses offers of help because of her determination to make the gathering perfect and stress-free for everyone else. How relaxed and comfortable do you feel in her presence?

In the same way that a host sets the energetic tone for a gathering, parents create an energetic landscape in which their children live and learn and grow. This is especially true for young children. What this means is that the stress of caregivers has a direct impact on the stress of children in their care. This truth is not a stick with which to beat your past (or present), imperfect self. It’s an opening through which you can step, inching forward a little at a time, bit by bit making life better for yourself and for the PFIC patient that you love.    

With all of that in mind, let’s talk about one of the most powerful stress-reduction tools: mindfulness. Mindfulness is a state of heightened awareness or presence, coupled with openness and non-judgment. It doesn’t require any special tools or training. In fact, young children are experts at it!

Think of the fully focused delight with which a toddler shovels sand or draws a picture or blows the seeds of a dandelion. This child has not yet learned to worry about whether their sand creation will be destroyed by the wind, whether their artwork is as good as someone else’s, or whether the neighbors want a fresh crop of dandelions springing up in their yard. That sort of learning accrues with time. In a sense, then, to practice mindfulness as an adult is to temporarily unlearn. It’s to experience the world through the eyes of a young child. It’s to feel the sand as if for the first time, to glide a crayon across the paper with a sense of wonder about what might emerge, or to feel the wind against your skin as if you are a dandelion seed and might at any moment be lifted away.

If you have vast swaths of uninterrupted time to dedicate to mindfulness, you are very lucky indeed. This isn’t necessary to reap it’s benefits, though. A recent study done at UC Berkeley explored the benefits of “microdosing” mindfulness. Researchers wanted to know whether the practice of seeking awe through ordinary experiences brings the same stress-reducing, happiness-enhancing benefits associated with more time-consuming mindfulness practices. The answer is: yes! So let’s talk about what discovering awe in the ordinary looks like. The researchers use A.W.E. as an acronym to describe the steps involved.

A is for Attention

Mindfulness is often described as completely open attention. In this study, where the goal was to foster a sense of awe or wonder, participants were encouraged to pay attention specifically to things they appreciate, value, or find amazing. To practice this step, carve out one minute of time to pay attention to something you like or find amazing. It could be the sensation of the shower water on your skin. It could be the sound of a loved one’s voice, the taste of your food, the texture of a houseplant, the colors of a sunset, or the feeling of the ground beneath your feet. For a brief moment, give your mind and heart fully to the sensations of whatever you are experiencing.

W is for Wait

When your attention focuses, your mind will naturally get quieter. Give this experience a little bit of time—the length of one full breath, perhaps. For the length of that breath, simply notice the quiet or the calm or whatever comes up.

E is for Exhale and Expand

Take a long exhalation—approximately twice as long as your inhalation. Doing so triggers your vagus nerve and calms the nervous system, turning down your body’s stress response. As you exhale, allow whatever you are sensing and feeling to expand within you.

You might wonder how these steps interact and whether all three are actually necessary for reducing stress. A long exhalation all on its own is often enough to bring stress down a notch. Similarly, taking a minute to focus your attention on some aspect of your surroundings may suffice to inject some calm into your day. A certain magic happens when these steps come together, though, with a brief pause (the “wait” step) between them.

The contrast between the quiet created by Attention and Waiting and the expansion generated with a deep Exhalation is what awakens awe. Attention and Waiting quiet the mind, and then Exhalation triggers the brain to release dopamine, which enhances your mood. As the study’s authors describe it, “First, you create a quiet inner space—imagine the pitch-black night sky on the Fourth of July, before the fireworks. Then fireworks light up the sky. The contrast dramatizes the experience. If the same fireworks took place at noon, the effects would be diminished. So, you quiet your mind with focused attention, you wait, and then you experience your own inner light show.”

If you are a caregiver to a PFIC patient, it may seem hard to grant yourself an “inner light show” while the child beside you is suffering. This is such a natural feeling and source of hesitation. You are not alone in it. Please remember that, in addition to the very real truth that you deserve and are worthy of moments of happiness, your suffering and stress cannot generate happiness for anyone else. Stress generates more of the same, creating a spiral that someone must interrupt. That someone can be you. Choosing to nourish one or two or three or ten minutes a day of peace, calm, awe, or joy is enough to transform a day. You don’t need an hour of free time to get started. You can microdose mindfulness, beginning with this moment right now.

Take a look around the room and let something that you like catch your attention—the view from a window, perhaps, or a painting or houseplant or blanket or pet. Allow yourself for just one minute to fully experience this thing. Pause in this quiet space of noticing. Breathe in. Then take a long breath out.

Each time that you do this, you are reducing stress and increasing well-being for yourself and—as a result—for the loved ones around you.

This is not a magic potion that will permanently eradicate stress from your life or from the lives of the people you care for. Living with PFIC, either in your own body or in the body of someone you love, is just plain stressful and hard. But by practicing mindfulness–even in small doses–you can interrupt the seemingly constant train of stress or worry. You can bring bits of magic into each day. At first, this may feel like too much to reach for on your toughest days, but mindfulness muscles grow with practice. Keep at it, being gentle with yourself as you practice. Over time, you may find yourself able to access presence, calm, stillness, or awe even on the darkest days.

One of the most heartbreaking aspects of living with PFIC (or loving someone who does) is the unpredictability of its course. For a while—perhaps even a long while—a treatment might work. The life of the patient and their family might feel beautifully, blessedly normal.  And then, for no obvious reason, that same treatment can become ineffective. Itching returns, along with misery and sleepless nights. Or some other symptom emerges, for which a cure remains elusive. In the same way that a treatment, when it works, makes all of life feel easier and more manageable, a reemergence of symptoms can make everything hard and overwhelming again.

If you find yourself in a comparatively comfortable state at this moment—one in which symptoms are well controlled—enjoy that. Allow yourself the pleasure of being in the moment, and know that the broader PFIC community is happy for the relief you’re experiencing.  

This month’s post is for patients and families who find themselves in the heartbreaking position of living with the return of symptoms that, for a time, had been gone. For a while, you were managing well, but now you feel defeated. For a while, your world made sense, but now it’s come crashing down.

You know that you have to move forward—have to keep putting one foot in front of the other. Depending on your coping style, you may be inclined to rush that process. “You’ve done this before, and you can do it again,” you might tell yourself. And you are right. You have done this before, and you can do it again, but there is something else you likely need to do first: grieve.

To grieve simply means to feel and express your own deep sadness. The definition is simple, but the process itself runs counter to much of the cultural messaging that we receive. Maybe you imagine that you need to stay positive for the people around you. Maybe you imagine that you need to stay positive for yourself—that if you don’t, you’ll fall into a pit so deep that you can never climb out again.

Why grieve, then? Why do something that sounds so miserable? Why not just choke the feelings down, plaster a smile on your face, and forge numbly ahead?

You can likely feel the answer to this question in your own body. You might notice a tightening in your throat or chest. Perhaps your muscles feel tense and painful. Maybe you notice your heart racing or notice your irritation flaring at the slightest of provocations. Unprocessed grief lives in our bodies as anger, irritability, fear, exhaustion, tension, apathy, despair, illness, and pain. What lives in our bodies comes to life in our relationships, too, coloring everything around us. Grief work is healing work. Grief work is the work of feeling and expressing your heartbreak so that, bit by bit, you can release it and move forward in a truer, cleaner way.

It is natural to need support with your grieving process. Reach out to a sympathetic friend or find a therapist. Ask your doctor or your child’s doctor how to get support. Join one of the PFIC Network’s support groups, or sign up for a one-on-one support session with the author of this article.

Your grieving process will be as unique as you are. Here are just a few examples of forms that it might take:

  • Carving out a particular time and space every day to allow yourself to feel everything that’s churning below the surface. You might, for example, do this in the shower, letting your tears mix with the water.
  • Sharing your feelings openly with a supportive friend or family member who understands the importance of just listening and holding space for you.
  •  Journaling about your feelings.
  • Taking walks in nature or sitting outside with a favorite tree, imagining your feelings releasing into the air that surrounds you.
  • Practicing yoga or meditation and, within that space, allowing whatever comes up to come up.
  • If you have a supportive partner, you might deliberately and intentionally take turns being the strong one. “Today is my turn to fall apart, and tomorrow is yours.” Of course, it’s important to be forgiving and flexible if a schedule like this proves too regimented for either person’s grief!
  • Creating art or music that reflects your feelings. These don’t need to be ‘good’ art or music. Crayon scribbles or a shrill wailing may be the most apt expression of your inner landscape right now. The power of this lies in the process of creating based on what’s inside you, not in the external outcome of that process.
  • Taking time to consciously remember that other families find themselves in the same position. Breathe in and out slowly and imagine these other patients and families who are in a situation like yours. Imagine their pain, a mirror to your own pain. Imagine your breath reaching out across the distance and joining together with their breath. Imagine that the grief work you do will be cleansing and healing for all of you.

Here at the PFIC Network, we see the hard work that you are doing to care for yourselves and your loved ones. We honor the love, courage, knowledge, and tenacity that you are showing and building. We get that this process is messy and painful. We see you in your loving, courageous, painful mess. If you have suggestions for how we can better offer emotional support, please reach out at mentalhealthsupport@pfic.org.

Webinar #1
Considering the Role of Stress in Pruritus
February 16, 2023

Pruritus is distressing. It has a negative impact on daily life and can lead to self-harm. There is a large unmet need in the area of managing pruritus. This webinar series offers a new approach to the way that we view pruritus. This is a 5-part webinar series that will offer tools to cope with pruritus.

Webinar number one has been designed to describe the mind-body connection. This connection tells us that the way that we think influences our physical symptoms. Conversely, our physical symptoms influence the way that we think. Understanding the way that our mind and body are connected suggests that interventions that help us shift 1) the way that we think about itch and 2) the way we respond to itch and our itch-related thoughts may shift our experience of itch. Secondly, this webinar highlights the shared neural pathway for pain and itch signals, which suggests that what we know about chronic pain might be relevant for chronic itch.

In an effort to get on the same page, let’s breakdown the terms.

· What is Pruritus? Pruritus is a biological process in the body.

· What is Itch? Itch is one symptom of pruritus; it is a sensation in your skin

· What is Scratching? Scratching is a behavioral response to itch/itchiness

Why do we experience itch? Well, it’s complicated. We don’t fully understand the biological processes involved in the sensation, but we know the itch sensation is important. An itch tells us that there might be something harmful on our skin. So, the itch sensation we experience tells our brain that we should scratch to remove whatever might be harmful on our skin. This is similar to pain signals; pain signals are sent to the brain tell the body take action to protect the body from whatever might be causing pain. Science has shown that children who experience chronic pain have overactive/oversensitive nerves that that repeatedly send pain signals to the brain, even when there is not a something in their environment causing them pain. This might be similar to what children who experience chronic itch experience.

As has been shown in chronic pain, stress is also a critical part of the chronic itch experience. When we are stressed, our bodies are often in “fight or flight” mode, which makes the itch sensation more frequent and intense. In order to better understand how to cope with itch, we need to consider the mind-body connection and consider the role that stress plays in chronic itch.

To do this, let’s consider 3 factors that influence the experience of itch.

1. Biological, including individual factors that influence our experience of the itch sensation, exposure to allergens (causes inflammation), and stress (activation of the ‘fight or flight’ response or the autonomic nervous system, activation of the HPA axis

in the brain, both of which lead to increased inflammation and increased itch signals)

2. Psychological, including itch-related thoughts (particularly thoughts that emphasize the negative parts of itch or acceptance-based thoughts), affect (emotions), awareness to the present moment, and stress

3. Behavioral, including scratching (see below for information about the itch-scratch cycle), increased attention to itch, and avoidance-based activities

A critical factor that influences the itch sensation is scratching. When we experience itch, we automatically and often without awareness scratch that area. And when we scratch, we cause skin barrier damage, which then exacerbates the itch sensation and drives the cycle to continue.

Over the next 4 webinars, we will learn how we can intervene at the biological, psychological and behavioral levels to reduce the intensity of itch and scratching as a result of pruritus. By identifying the role that stress plays in itch, we can begin by exploring strategies that reduce stress for children and parents alike to manage itch and the burden of pruritus.

Next week, we will talk about tips for managing stress.

If you google the phrase “what to do when you can’t sleep,” you will find an array of suggestions. You will also find that most of these suggestions assume that you have the time to sleep. They assume that the thing holding you back from catching sufficient zzz’s is the bombardment of your own thoughts or the cup of coffee you drank after dinner or the blue light emanating from your phone screen. They assume that your insomnia is rooted in a problem that is readily fixable. If it is, that’s good news, and you can find some tips for managing it here. (We may also dedicate a future blog post to this issue.) But if you are living with PFIC or are the caregiver to someone who is, your current barriers to sleep may be fixed and persistent. Insatiable itching can make sleep virtually impossible. Caring for and offering comfort to a child who has the itch likely means that the amount of sleep available to you falls well below the recommendation of 7+ hours per night.

So, what do you do when you literally can’t sleep? A small study performed at the University of Kentucky offers an intriguing suggestion: If you can’t enter a sleep state, try entering a meditative one instead.

In the first portion of the study, participants (none of whom were experienced meditators) were assigned either to a control group, a nap group, or a meditation group. Psychomotor vigilance (reaction time, in lay person’s speak) was tested across all groups following either a forty-minute nap or forty minutes of meditation. The meditators outperformed the nappers and the control group by a significant margin. In a second round of tests, all participants were subjected to sleep deprivation for an entire night. Those who meditated for forty minutes following the sleepless night showed significantly less impairment than the non-meditators.

The same researchers also found that experienced meditators sleep for fewer hours per night than non-meditators, with no corresponding loss in psychomotor vigilance. It’s important to be careful about the conclusions we draw from small and limited studies, but this research suggests that when you can’t sleep, you may be able to offset some of the ill effects of sleep deprivation by spending time meditating.

Improved reaction time isn’t the only perk of meditation. Meditation comes with a long list of other potential benefits: 

  • Decreased stress
  • Decreased negative emotions
  • Reduced anxiety
  • Increased patience and tolerance
  • Lower resting heart rate
  • Lower blood pressure
  • Increased creativity

It’s interesting to note that many of the proven benefits of meditation track with the proven risks of sleep deprivation. For example, sleep deprivation often leads to an increase in blood pressure, but meditation can potentially help to lower it. Sleep deprivation increases stress, but meditation reduces it.

You might, quite understandably, be wondering how on earth you are supposed to fit yet another thing into your day. Well, you don’t have to. Try tucking a few moments of meditation into your sleepless night.  

Let’s talk about what that might look like. Meditation in its simplest form can look something like this:

  1.  You assume as comfortable of a posture as circumstances allow.
  2. You consciously relax the tension in your body.
  3. You breathe, giving your full attention to the experience of this one breath. Perhaps you think ‘in’ with your inhale and ‘out’ with your exhale. Then you do it again. You might also choose to count your breaths.

You will get interrupted—either by the bounciness of your own mind, by the itchiness of your body, or by the needs of the child you’re caring for. Interruption and distraction are a normal part of meditation. Choosing to meditate is simply choosing to return—over and over—to this relaxed and conscious breathing. When unpleasant feelings or experiences come up for you, there’s no need to fight them or push them away. Acknowledge them and, as soon as you are able, return to your breath.

Your process will probably bear no outward resemblance to the meditation of a monk cloistered away in a monastery. If you are meditating while caring for a suffering child, you might be pacing the room, bouncing a baby as you tune into your breath. You might be holding a child’s hand, taking a few conscious breaths at a time, saying something reassuring, and then returning to your breath again. The interruptions to your meditative breathing may be frequent, intense, and long. That is all the more reason to offer yourself these pockets of stillness. It is all the more reason to recharge your batteries in whatever small ways are available to you.

Unfortunately, there are no studies (that we know of) looking at the very particular circumstances of sleep deprivation among PFIC patients and their caregivers. As any seasoned PFIC patient or caregiver can tell you, not all of the answers are available yet. We offer the above intro to meditation and its benefits as something to try. It’s something to experiment with, consider, or explore. As you do, please share your experiences by reaching out to us at mentalhealthsupport@pfic.org! Let’s learn together as a community. And if you have other ideas for how to soften the effects of sleep deprivation, we want to hear them! You are, after all, the expert on your life, your body, and your experience.

About Us

Get Involved

The Disease