Love Vs. Fear

How to Walk Away From Fear, and Toward Love.

Two emotions swirl in the heart of just about every parent: love and fear.

If you are standing near a busy road, and your young child suddenly runs toward an oncoming truck, fear quickly becomes the loudest of the two. And this is a good thing! Your brain’s threat detector, the amygdala, sends out signals that launch your body into fight-or-flight mode. Before your rational brain even has time to process what’s happening, you are flooded with adrenaline and surge with energy. You sprint faster than you thought you could toward your little one and snatch your child just in time. It takes a while for your heart rate and blood pressure to come back down. You may feel shaky or enraged. Perhaps you cry. This is all part of your body’s natural and necessary return to homeostasis—to a state of balance and calm. In this instance, your fear has helped to save your child’s life. Your fear has been in service of your love.

What happens, though, when a threat doesn’t go away? If you are the parent of a child with PFIC, it isn’t just a single truck that you fear. The threat doesn’t simply roll past and disappear into the horizon. A better metaphor for your reality may be this: For no good reason at all, your child is compelled to walk on the shoulder of a highway. You have no control over this basic fact—at least not right now. Being the loving parent that you are, you walk next to your kid, hand in hand. Maddeningly, you are not permitted to stand between your child and the traffic. Rather, you must stay on the outside, operating as a guide and a source of support and comfort, rather than as a literal shield. You wish you could be a shield.  

If fear feels like your constant companion, that’s understandable. Fear is a normal response to illness, and so ongoing fear is a normal response to ongoing illness. Your fear is just a natural outgrowth of the desire to protect your child. Sometimes, though, fear can become so big, so constant, and so overwhelming that it constitutes its own problem. Sometimes, fear buries the more positive and joyful feelings associated with love. Let’s think back to the road metaphor for a moment. When the traffic diminishes or disappears (let’s say your child is experiencing

some symptom relief from a new treatment), what happens to your fear? Does it diminish? Disappear? Or does it retain its chokehold? Are you able, in such moments, to simply enjoy the feeling of your child’s hand in yours? Or are you swiveling your head in all directions, scanning for the next threat? How loud, close, or fast does the traffic have to be for fear to dominate your experience? How quiet, distant, or slow must the traffic be for your feelings of love to outshine your feelings of fear? 

Whatever your answers to these questions are, you can begin taking baby steps in the direction of love–and away from fear. 

This is true both pre- and post-transplant. It is true in the wake of a fresh diagnosis, and it is true in the aftermath of an unsuccessful treatment. It is true even in the middle of the darkest, most sleepless night. We can all move, one small step at a time, out of fear and into its opposite–love.  

What does this look like?

Let’s imagine a moment in which you’re snuggling with your child, but your mind is disconnected from what your body is doing. It is spiraling with worry and fear. As soon as you notice that your fear has taken you away from your child and from the moment you’re in, you have an opportunity to baby step your way back. This simple noticing is step one.

Step two could be a deep breath in and a long, slow breath out. Perhaps you count to four on your inhale and six on your exhale. When we lengthen our exhalation so that it’s longer than our inhalation, we signal to our brain that we’re safe. Just a few of these mindful, slow breaths can be enough to begin calming our ever-vigilant threat-detecting mind.

Once you’ve noticed your fear and greeted it with a few deep, slow breaths, begin noticing the feeling of being in your own body. More specifically, you might notice the sensation of your child’s hand in yours or the warmth of their body as it leans into you. For just a moment, give yourself fully to these sensations. Affectionate physical touch releases oxytocin, the ‘love hormone’, and can bring with it feelings of love and well-being. These are not just the opposite of fear; they are the antidote to fear. Love won’t wipe out fear permanently, but for one micro-moment at a time, it can replace fear with something infinitely more nourishing. Baby steps, remember? 

Every time that you notice the spiral and come back to the simple experience of being in this moment and connecting with your child—whether that means cuddling with them, making eye contact, laughing together, or listening deeply to what they have to say—you are baby-stepping out of fear and into love.

Here are a few more small steps you can try:

  •  When you feel your stress building or refusing to abate, ask yourself this simple question: “Love or fear?” Notice what feels fearful inside of you. Then notice the love that is hiding beneath it. Give your attention to that feeling of love.
  • Open yourself up to receiving care, affection, and love from others. Be willing to tell a trusted friend or family member what you are feeling and how they can help—“I’m terrified, and I know you can’t fix it, but I could really use a hug.”
  • Notice the small ways in which others are already showing you love. Include your love for yourself in this! You can jot these down or just take a moment to observe and appreciate each warm smile, each small favor, each kind word, and each gentle caress.
  • Bookend your day with positive and loving thoughts. Before you climb out of bed, take a deep breath and connect with a loving thought, feeling, or intention. At the end of the day, jot down a positive or loving thought—something you would like to dream about, perhaps—and tuck it beneath your pillow.
  • Seek professional help. Getting help is often the bravest, most loving thing we can do. Find an empathic therapist. You can also join one of the PFIC Network’s PFIC support groups.

You won’t completely vanquish your fear (if you do, please teach the rest of us how!), but by replacing two seconds of fear with two seconds of love, you’ve accomplished something meaningful. Over time, perhaps you manage to replace two minutes of fear or even two hours of fear with something lighter, softer, and more loving—something that nourishes you and your child.

As the year nears completion and much of the world enters a holiday season, pressure—both at work and at home—may be on the uptick, and your to-do list is likely growing. For some people, nothing sounds more thrilling than back-to-back holiday parties or a house crammed with out-of-town visitors. But if you are a PFIC patient or a caregiver to a child with PFIC, the addition of more chaos to your life may feel, well, a bit too chaotic. How do you tackle the essentials without succumbing to overwhelm? How do you open yourself to the parts of this season that nourish you and at the same time protect yourself from the aspects of it that leave you feeling drained?

A metaphor from the chronic illness community may be helpful.

Christine Miserandino, a chronically ill blogger, was sitting in a diner with a friend when the friend asked her what it’s like to be sick all of the time. Christine handed her friend a bundle of spoons and explained the experience of chronic illness along these lines. Each spoon that her friend was holding represented a unit of energy. If it’s a good day, you might have 12 spoons when you wake up. But everything you do drains you of spoons. For someone coping with illness, showering might take two whole spoons. Getting dressed might take one more. If you have to go to the doctor or work part-time, that could be four or five or six spoons. Because your spoons are limited and the number varies from day to day, living with chronic illness means you must ration carefully. Will you shower, or will you talk to your mom on the phone? Will you wash a load of laundry, or will you cook dinner? Will you attend that holiday gathering, even if doing so is likely to land you in bed for the whole of the next day?

If you are a PFIC patient yourself, you likely understand this rationing of energy. Perhaps you have crashed more than once into the painful reality that you can’t do everything. Maybe the things that once felt like no big deal are, for now, off the table. Living with itching, fatigue, pain, anxiety, or uncertainty decreases your available bandwidth; you simply have fewer spoons. If you are the caregiver for a child with PFIC, then you, too, are confronted with challenging limitations. You may be struggling to cope with sleepless nights, steep medical bills, anxiety, and the very particular needs of your child for just the right foods or an ever-changing array of medications. All of this takes spoons—a lot of spoons. And all of us, whether healthy or ill, are finite—painfully, infuriatingly, undeniably finite.

Resistance to the reality of our finitude is a recipe for overwhelm and burnout. It’s tempting to pretend to yourself or others that you can do it all. Tempting but exhausting.

If you find yourself stuck in a state of overwhelm and exhaustion, begin by acknowledging it: “This is a lot, and I’m completely drained.”

Next, consider taking an inventory of the places that your energy is going. This includes the things you do (working, paying bills, feeding yourself or your family, managing medications, attending social events, etc) as well as any mental or emotional activity, like worrying about the future, fretting over the judgments of others, replaying an unpleasant interaction you had with someone over and over in your mind, ruminating about the state of your relationships, or railing inwardly about how messy your house is.

Once you identify that you’re using more spoons than you actually have and get a sense of where these spoons are going, you can begin to figure out which of these energy expenditures are serving you (and your child, if you’re a PFIC parent) and which are not. Odds are, you don’t have the option of hoarding all of your spoons and refusing to do anything ever again. But all of us have something we can let go of. Do you actually want to attend that six-hour holiday gathering at your great aunt’s house? Does it feel worth it to you to maintain every holiday tradition? Do you want to smile and nod through yet another painful conversation with this or that person? Is it helping your relationship to ruminate about it, or might something else feel more healing?

Once you find something that you are doing that drains you but isn’t strictly essential, you’re in a place of power. You have the power to approach this differently—to conserve this particular spoon. Perhaps there is something that you can delegate to a family member or friend or outsource to a housecleaner or other paid helper. More often, though, conserving spoons will mean setting a boundary with another person. “I’d love to come to dinner at your house, but I can only stay for two hours.” Or “I’ve received plenty of medical advice, and I’m not interested in hearing more.”

When we set a boundary with another person, we are setting a boundary with ourselves. We are, for example, committing to leave that dinner party at the two-hour mark, even if it feels like an awkward time to go. We are committing to walk away from a conversation that feels unhelpful or triggering.

We can also set boundaries that don’t involve other people at all. Here’s one that can be helpful: “There is a lot of uncertainty and heartache in my life, and I am allowed to worry about all of it, but I’m not going to do it all the time. I’ll set aside a ten-minute worry window every day. If I find myself ruminating or worrying at other times, that’s fine; I’ll just take a deep breath and remind myself to temporarily set those thoughts down and come back to them later during my worry window.” (If you set this boundary with yourself, be sure to follow through and actually give yourself your daily worry window, ideally not right before bedtime.)   

When we are exhausted, overwhelmed, and depleted of spoons, it’s natural to find ourselves in a state of reactivity. We react to one problem after another, always in crisis mode. By consciously conserving even just one or two spoons, you interrupt this pattern. You open up a small space in which something new is possible—a space in which you can creatively respond to the challenges you face.As we enter this holiday season, we at the PFIC Network wish you just that: space around your challenges. We wish you all of the things that make this exhausting journey a bit more bearable: love, support, laughter, rest—and of course, an extra spoon or two, as well as a few tasty holiday treats.

This July, PFIC Network was honored to receive a Global Genes Health Equity in RARE Patient Impact grant to address challenges affecting underserved patient communities. 

With this grant, we created a new education and outreach project called “REACH” Around the Globe (Research, Education, Advocacy, Collaboration, and Hope): a three-part workshop series and survey framework. 

REACH is an International Alliance initiative to understand healthcare disparities facing international PFIC patients, and to develop country-specific advocacy action plans through multi-stakeholder collaboration. 

We successfully hosted our first two REACH series in September 2022 for the communities of India and Pakistan.Through the project we were able to: 

  1. Galvanize and solidify partnerships between patients and healthcare providers,
  2. Formally assess and prioritize patient needs, and 
  3. Create advocacy action plans specific to each country.

With direct outreach, targeted education, and interpretation services, we were able to engage new PFIC patients in India and Pakistan who were previously unaware of the resources that were available to them, and of how they could get involved and advocate. This project also empowered patient leaders by breaking down linguistic barriers so they could speak to their unmet needs in their own language and truly feel heard and understood.

Through this project, PFIC Network was also able to fulfill the need to translate the PFIC Educational Brochure into Hindi to make this useful tool more accessible to patients of India. Similarly, PFIC Network shipped ten of its already translated Urdu PFIC Educational Brochures to the Children’s Hospital of Lahore, Pakistan per healthcare provider request.

_________ 

The PFIC stakeholder community is global, and this project revealed that the REACH framework can be successfully implemented to identify and help address the unique challenges of underserved PFIC patients in countries with severe healthcare disparities. 

Resultantly, the advocacy action plans provide patients with the necessary partnerships and clarity on next steps they can actively take to tackle their country-specific challenges. This coordinated multi-stakeholder attention and strategy is a resource that PFIC patients in India and Pakistan have never had before. 

Over time, PFIC Network plans to implement Project REACH for all members of the International Alliance –  with the goal to make PFIC Network’s mission and advocacy objectives more equitable and accessible for all. 

Written by Lisa Jensen, Masters in Counseling Psychology
Mental Health Support Group Leader

One experience is virtually universal across the rare disease community: the experience of not feeling understood. Maybe you tell a friend about your child’s PFIC diagnosis, and they respond with a sunny, “Don’t worry, I’m sure it will all be fine.” Or perhaps you are a PFIC patient yourself, and when you try to explain the Itch to a relative, they casually suggest that you try Benadryl or a fad diet or whatever essential oil healed their neighbor’s cousin’s cat’s cancer. In either case, the message seems to be this: “Good vibes only, please! Let’s keep it positive! Focus on the solutions!”

Many of us live in cultures that have a deep discomfort with suffering and uncertainty. We tend to be better at distraction and deflection than at sitting together in the hard, scary stuff.

Even if you are lucky enough to have friends and family members who are understanding, supportive, and empathetic, you might find yourself sugar coating reality. Maybe you hold the hardest feelings in. Maybe you don’t want to pull anyone else down or come across as negative or needy.

Of course, the truth is that all humans are needy. We need not only air and food and water but also love, support, safety, and belonging. We need to feel seen, understood, cared for, and valued—especially when we are exhausted or overwhelmed or teetering on the edge. Sometimes, the only way to be understood and cared for is to open up more to the people around you. Other times, doing so is emotionally unsafe, and it is wiser to pull back. In either case, there is one relationship in which you get to decide whether or not you receive the compassion and understanding that you deserve. There is one relationship in which, with a bit of work, you can always feel seen, understood, and cared for. What relationship is that? Your relationship with yourself.

Regardless of whether or not your relatives, friends, or colleagues extend understanding and empathy your way, you can learn to do so for yourself. A large and ever-growing body of research demonstrates that self-compassion decreases stress and feelings of isolation, while also increasing resilience and happiness.

Self-compassion might sound like a vague or fluffy term. Within the psychological research, though, it refers to a very specific three-part practice. The three elements of practicing self-compassion are:

1. Mindfully observing your thoughts and feelings. This means taking the time to see and understand yourself. As self-compassion researcher Kristin Neff puts it, “We cannot ignore our pain and feel compassion for it at the same time.” Of course, we also cannot feel compassion for our own pain when we are completely swept up in it. Mindful observation means that we take a baby step back from our thoughts and feelings so that we can view them as a part of our experience rather than as the entire picture. One way to do this can be to take a few deep breaths and mentally scan your body, noticing what physical sensations accompany your thoughts and feelings. You might notice, for example, that you clench your jaw when you feel angry or that your chest tightens when you feel anxious. You don’t need to change this. Simply notice.

2. Recognizing that suffering and inadequacy are part of what it means to be human. When we recognize this, the understanding follows that our suffering unites us with the whole of humanity. It’s natural to feel isolated and alone. It’s so natural in fact, that at any given moment, millions of others are likely suffering just as acutely as you are. That doesn’t mean you have no right or reason to suffer. But it does mean that you aren’t truly alone in it. Taking a moment to recognize this can help soften the sharp edges of suffering.

3. Practicing self-kindness. This means being warm and gentle with yourself. It means treating yourself like a friend, allowing yourself to be less than perfect, and prioritizing your own needs and self-care. If you are a PFIC parent, prioritizing yourself might feel nearly impossible. It might even seem that reducing your own suffering would be selfish or unfair, when your child is suffering so much. But to be a caregiver—to give care—requires that you have something to give. Offering yourself kindness and compassion can actually boost your capacity to care lovingly and tenderly for your child, as well as your capacity to contribute to the world in other ways that feel important to you. 

Self-compassion is a learnable skill. Admittedly, though, it comes more easily to some people than to others. If your early caregivers or role models lacked compassion for themselves or did not consistently show compassion for you, then learning this skill will likely require an extra dose of patience and practice. Hang in there! By doing this work, you can create a different legacy for the children in your life. When the kids you love see you treating yourself with kindness and compassion, they learn to treat themselves like a friend, too.

That’s the beauty of self-compassion: that in every situation, you have a friend right there with you. Will self-compassion completely eliminate the hurt of being misunderstood or the struggle over how much to share with your loved ones? No. But here is what self-compassion can do: it can soften your pain. It can put it into perspective. It can increase your feelings of connection. And it can help you to make relationship choices from a place of inner clarity and resilience. 

Pictured above: Our team was able to meet and gain valuable insights from other CZI Rare As One Network  grantees at the
2022 CZI Rare As One Annual Convening in San Diego, CA.

As we approach the one-year anniversary of our three-year $600,000 capacity building award from the Chan Zuckerberg Initiative (CZI), we are excited to reflect on the many successes we have already experienced through this amazing opportunity.

The Chan Zuckerberg Initiative started the Rare As One grant program to provide capacity support for rare disease patient-led organizations to build patient collaborative research networks. When we applied for this grant, we proposed the following aims to start developing this type of collaborative network for PFIC:

  1. Expand our global community engagement program and assess differences in access to diagnosis, treatment, and research opportunities,
  2. Increase our collaborations with overarching organizations to advocate for genetically informed diagnoses, and 
  3. Professionalize our international patient registry to focus on genotype-phenotype correlations using patient-reported outcomes (PROs).

Since receiving the grant in November 2021, we have:

  • Hired on an incredible team of staff to support these goals.
  • Hosted our first Scientific Conference, which included patient-researcher roundtable discussions
  • Launched the International Alliance  and Project REACH initiatives to find country-specific advocacy solutions.
  • Relaunched our patient registry on the REDCap platform, and built surveys that will produce valuable data for research. (We have also begun the process of translating the registry into Spanish, Italian, and Polish!)
  • Joined the Global Genes Global Advocacy Alliance and hosted a booth at the European Society for Paediatric Gastroenterology, Hepatology, and Nutrition (ESPGHAN) Annual Meeting. 

The CZI award has catalyzed a new and spectacular phase of growth for the PFIC Network. What started in 2018 as a determined grassroots group of patient families united by a basic commitment to ensuring patients have access to resources and support has quickly blossomed into a passionate global network of PFIC families and researchers. 

In the upcoming years, we hope to continue our work in advocacy and support while building partnerships between patients/caregivers, researchers, clinicians, and industry to develop a shared research agenda focused on outcomes most meaningful to PFIC families. 

We look forward to discovering what more amazing things we can accomplish as a community.  

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