Tag: living with chronic illness

  • Looking Back: 30 Years of Shame and Finally Understanding My Experience

    Looking Back: 30 Years of Shame and Finally Understanding My Experience

    I’ve lived with this illness for over 30 years, and for most of that time I was ashamed of it.

    Doctors kept telling me it was all in my head.

    They said I was depressed, anxious, or that I just didn’t want to work hard enough. They usually prescribed antidepressants and anti-anxiety medications, claiming these drugs would fix me. While the medication may have helped my emotional state somewhat, it did nothing to fix the physical symptoms.

    Thankfully, I eventually stopped letting them gaslight me into taking more and different medications.

    Every time I tried to explain how my body would completely crash after doing normal things, I was met with skepticism or pity.

    So I started doubting myself.

    I felt weak.
    I felt crazy.
    I carried a lot of shame for something I couldn’t control.

    The fatigue and exhaustion that comes with this illness is crushing.

    It’s not normal tiredness. It’s a deep, heavy exhaustion that sleep doesn’t fix. Even the smallest activities can leave me completely wiped out for days.

    My sleep tracker consistently shows that I get adequate deep sleep and REM sleep, yet I still wake up exhausted. That helped me understand something important:

    The problem isn’t simply how much I sleep.

    It’s that my dysautonomia prevents the sleep from being restorative.

    In the early years, the emotional side of it felt a lot like PMS — that same sudden emotional dysregulation, irritability, and feeling completely off — except instead of happening once a month, it could hit at any time.

    Only recently have I finally understood what’s really happening.

    What I have is dysautonomia.

    My autonomic nervous system doesn’t regulate properly anymore.

    That’s why I can suddenly feel freezing cold in a warm room. That’s why I’m much more comfortable lying down than sitting or standing. And that’s why even mild activity can make my whole system short-circuit — suddenly bringing on intense brain fog, overwhelming exhaustion, headaches, insomnia, anxiety, and sometimes depression all at once.

    ME/CFS always felt like an incomplete label to me.

    Yes, I crash after exertion.
    Yes, sleep doesn’t fix it.
    Yes, my body has never functioned the way people expect it to.

    But understanding it as dysautonomia finally explains the day-to-day reality of living in a body whose nervous system breaks down so easily.

    The only thing that actually helps is pacing — staying within my energy envelope.

    I try to live as close to the edge as I can, but carefully. Migraines and tinnitus have become warning signs for me. If I respect those early signals, I can often avoid triggering insomnia, which is far worse than a regular crash and completely throws me off balance.

    After 30 years, I’ve finally stopped blaming myself.

    That alone has been healing.

    I’m sharing this journal entry in case it gives someone else a little more language for their own experience.

    And for family members, friends, and doctors: please know that when we keep turning down invitations, or seem withdrawn, or disappear for long stretches of time, it’s not because we don’t want to be around you.

    Our energy is extremely limited.

    We have to be very careful to avoid crashes.

    Even now, I keep a little journal between doctor visits so I can clearly communicate what I’ve been experiencing. If you’re struggling to explain this illness during appointments, writing things down and bringing it with you can be incredibly helpful.

    Sometimes understanding does not cure the body.

    But it can begin to release the shame.

    And after so many years of being misunderstood, that matters.

  • Living with ME/CFS: Finding Sanctuary, Resilience, and Hope Within Limits 🌿

    Living with ME/CFS: Finding Sanctuary, Resilience, and Hope Within Limits 🌿

    With steady mindfulness and pacing, I feel like my capacity for living with ME/CFS, at times increases. 🙂

    Sometimes I even catch myself wondering if I might be improving. It’s been over 30 years now. What I’ve learned is less about returning to who I once was, and more about creating a meaningful and satisfying life within the boundaries that moderate ME/CFS sets for me.

    It took a long while to move through the confusion, the anger, the grief, and the deep ache of seeing my old life fall away. I was bedbound more than once. Now I’m mostly homebound, but my home has become a kind of sanctuary—set up in a way that conserves every bit of energy it can, especially on days when PEM needs accommodation.

    So when people ask whether we’ll recover what we once had if a cure arrives… I honestly don’t know. But I do know that the human body and spirit have a remarkable resilience, and that even after years of illness, small shifts are possible.

    What matters most, at least for me, is that a cure would lift the constant threat of worsening, the fear of crashing, the weight of limitation.

    What grows back from there—strength, stamina, joy—might take time, but I believe healing is never truly closed to us.

    Whatever form it takes, we deserve days filled with gentleness, meaning, and hope. And if a cure comes, we’ll meet it with everything we’ve learned about patience, courage, and the quiet art of living with this illness. 🌿

  • A Refuge That’s Never Truly Out of Reach

    A Refuge That’s Never Truly Out of Reach

    For those of us living with chronic fatigue syndrome (ME/CFS), finding peace can often feel like an elusive dream. The body aches, the mind fogs, and even the simple act of resting can feel like a challenge.

    But beneath the surface of our struggles—beneath the exhaustion, frustration, and the endless cycle of unfinished stories—there is a refuge that has never left us. A place within that remains untouched, waiting patiently to be noticed.

    Across traditions, this inner sanctuary is described in many ways. In Christianity, it is the peace that passeth understanding, the quiet presence of the Holy Spirit that calms the heart. In Buddhism, it is our Buddha nature, the still, pristine mind that shines beneath our thoughts. In Jewish practice, Shabbat offers a sacred pause from the world’s demands, a time to rest in the presence of the I AM. Whether through Vipassana’s gentle observation, Samatha’s calming focus, or the surrender of “Let go and let God,” the invitation is the same: to rest in the peace that is always there, even if just for a moment.

    But here’s the truth that many of us don’t expect—when we set the intention to relax, to find that peace, it’s common for our minds to do the exact opposite. The very moment we try to slow down, all the unsettled thoughts, worries, and frustrations rise to the surface. It’s like sitting down to meditate and suddenly realizing just how noisy the mind really is. For those of us with ME/CFS, this can feel especially overwhelming. Our bodies are already weighed down by fatigue, and now our minds seem unwilling to give us the rest we crave.

    But this isn’t a sign of failure—it’s part of the process. Just as clouds drift across the sky without altering the vastness behind them, our thoughts come and go without touching the deeper peace within us. The key is not to fight these thoughts, not to grow frustrated or discouraged, but to witness them with gentle curiosity. To let them rise and fall, trusting that underneath the noise, the stillness remains.

    This practice takes more than just patience—it requires self-compassion. We have to be kind to ourselves, especially when the mind feels restless or when peace feels far away. Forgiveness becomes a part of the journey: forgiving ourselves for not feeling better, for being frustrated, for wishing things were different. And most of all, it requires surrender. To let go of the need to control how or when peace arrives, and to trust that it will reveal itself in its own time.

    Over the past month, I’ve faced one challenge after another—the sale of my RV, packing up a home that had been my refuge for over 30 years, and the physical demands of moving into a new apartment. Each step of the process required me to push beyond my body’s natural limits, triggering post-exertional malaise. There were moments I had to override the signals of fatigue just to get through the next task, knowing full well the cost it would bring later. And yet, I approached it as mindfully as I could, listening when possible, resting when needed, and trusting that I would eventually return to the gentle rhythm of proper pacing.

    Now, as I settle into this new space, I look forward to reclaiming that mindful practice of pacing—of finding the balance between effort and rest, between doing and simply being. Even though my body is still recovering, I know that the peace I’m seeking is not dependent on my circumstances. It’s always there, beneath the surface, waiting for me to slow down, to breathe, and to notice.

    And so, I offer this to you—whether you live with ME/CFS, face chronic challenges, or are simply navigating the complexities of life. The path to peace isn’t always smooth, and the mind may resist at first. But beneath the noise, the frustration, and the exhaustion, there is a refuge that has never left you. It’s not something you have to create or chase—it’s already there, waiting to be noticed.

    Let go. Be kind to yourself. Trust the process.

    And when you least expect it, that peace—the one that passeth understanding, that shines with the light of your Buddha nature, that whispers with the breath of the Holy Spirit—will rise to meet you.

    Because the truth is, that refuge is never truly out of reach.

    🙏🕊🙏

  • Understanding Life with ME/CFS

    Understanding Life with ME/CFS

    Living with ME/CFS can feel like moving through a world where energy is always scarce, even after sleep or rest. Each day often starts with a level of fatigue that others might experience only after running a marathon, and even the smallest tasks—like taking a shower or answering a message—can lead to overwhelming exhaustion known as post-exertional malaise (PEM). This exhaustion isn’t just tiredness; it’s a deep, often immobilizing weariness that can affect every system in the body.

    For many, symptoms extend beyond fatigue and include pain, cognitive difficulties often called “brain fog,” sensitivities to light and sound, sleep disturbances, and immune symptoms like swollen glands or a sore throat. Some people describe their experience as feeling trapped between a desire to live fully and a body that constantly enforces limits. Social and professional isolation can add to the challenges, as ME/CFS often means saying “no” to friends, work, and daily activities that once brought joy and connection.

    This condition varies greatly, so while some may have more freedom on “good” days to engage in gentle activities, others may find themselves mostly confined to bed, carefully rationing energy just to make it through each day. The need for pacing—moving through life in a slow, intentional rhythm—is key to avoiding painful crashes, yet it can feel isolating, as others may not understand the invisible boundaries ME/CFS places on energy.

    🙏🕊️🙏

  • The Art of Pacing: Managing Chronic Fatigue Syndrome with Skillful Means

    The Art of Pacing: Managing Chronic Fatigue Syndrome with Skillful Means

    There is a rhythm to living with chronic illness, one that requires a kind of surrender. Those who walk the path with myalgic encephalomyelitis or chronic fatigue syndrome soon learn that pacing is not merely a strategy—it becomes an art form, a way of listening, of harmonizing with the body’s quiet whispers before they become cries. To pace oneself is to acknowledge the body’s finite energy, to move in step with the breath of fatigue, gently, humbly, knowing that to overstep the body’s boundaries is to invite collapse.

    It is not an easy lesson, this slow dance with limitations, yet it is one that teaches a profound wisdom. For those of us living with this condition, pacing is a compass, guiding us through days where the terrain can feel treacherous, unpredictable. It is, in its essence, the practice of recognizing when to move forward and when to step back. We become more attuned to the varied signals of our bodies—perhaps tremors of exhaustion, increasing tinnitus, irritation, a flutter of dizziness, nausea, insomnia, headaches or the dimming of cognitive clarity. In these moments, we learn that to heed these signs is to honor the body’s wisdom, to respect its limits as one might respect the changing seasons.

    Pacing, though practical, is deeply spiritual as well. In the Tibetan Buddhist tradition, there is a teaching of upaya, or skillful means, which echoes the heart of pacing. Skillful means refers to the wisdom of knowing what action is most appropriate in any given moment, guided by compassion for ourselves and others. For those of us managing a chronic illness, pacing is our skillful means, the practice of compassion extended inward, toward the tender, vulnerable places within us that need rest, gentleness, and care.

    This is not weakness. On the contrary, there is a quiet strength in pacing, a strength that arises from restraint, from knowing that our worth is not measured by the speed at which we move or the number of tasks we complete. Instead, it is measured by how we listen to the body’s call for stillness, how we cultivate patience in the face of limitations, how we respond to the world with wisdom rather than haste.

    In the same way that skillful means in Buddhist practice requires a deep awareness of the present moment, pacing invites us to be fully present with our bodies, to sense when we are nearing our edge and to pull back with kindness. It requires discernment, the ability to prioritize what truly matters, letting go of the unnecessary so that we may preserve our energy for what is essential. And, perhaps most importantly, pacing asks us to be flexible. What works for us today may not work tomorrow. Like the ebb and flow of the tide, we must continuously adjust, staying attuned to the changing nature of our energy levels, adapting with grace to whatever arises.

    To pace well is to cultivate trust in ourselves, to believe that our bodies—though fragile—are capable of guiding us toward balance. It is to let go of the constant push toward productivity, embracing instead a quieter, more sustainable rhythm of being. This trust grows over time, as we learn to befriend our bodies rather than seeing them as enemies. We begin to see pacing not as a limitation, but as an opportunity to deepen our relationship with ourselves, to practice self-compassion in the most tangible of ways.

    And so, we move slowly, deliberately. We choose rest when it is needed, even when the world outside rushes by. We choose to pause, to breathe, to trust that this moment of stillness is as important as any action we might take. In this way, pacing becomes not only a survival strategy but a path to peace. It teaches us to live in harmony with our bodies, to respect the boundaries they set, and to find beauty in the gentleness of our compassion.

    Pacing, like skillful means, is not something mastered overnight. It is a practice that deepens over time, shaped by patience, by trial and error, by learning to let go of perfectionism. But with each step, we become more attuned to the wisdom that already resides within us. We learn that pacing is not a sign of giving up, but of holding on—holding on to our health, our well-being, and our sense of self in the midst of struggle.

    Pacing, in its truest form, is an act of compassion toward ourselves, a recognition that while life with post viral ME/CFS has taken much from us, it has not taken everything. It is not a dance of perfection, but rather a delicate balancing act between what was and what is. The grief over what we have lost is real, and it deserves to be honored. We grieve our former selves, the life we once knew, and all the possibilities that seem to have slipped away.

    But after the grieving, something else begins to emerge. Slowly, through the quiet practice of listening to our bodies and respecting our limits, we begin to discover a new way of living—not the life we once imagined, but a life nonetheless. And within this new life, there are still moments of joy, moments of lightness. These moments may look different from what they once were, but they are no less real. They come from acceptance, from doing more of what works and less of what doesn’t. They come from the simple peace of knowing we are doing our best within the constraints we face.

    To pace is to acknowledge these constraints, to know that while we may not live fully in the way we once dreamed, we can still live meaningfully. We can still find purpose, connection, and even happiness within this new rhythm. It is not a rhythm we would have chosen, but it is ours now, and there is strength in learning to move with it rather than against it. In this process, we find that joy and peace are still possible—not despite the illness, but alongside it, within the space that remains.

    And so, with time, we learn to rest in the assurance that we are whole in our own way, capable of living a life that, while different, still holds beauty, meaning, and moments of joy.

    Following the breath,
    We learn the art of patience,
    Peace within each step.

    🙏🕊️🙏

    Book Recommendation: Pema Chödrön, The Wisdom of No Escape and the Path of Loving-Kindness

    In The Wisdom of No Escape, Pema Chödrön presents teachings on accepting life as it is, rather than wishing it were different. Her words remind us that even in the midst of suffering, there is always the potential for transformation—not by running from our difficulties, but by turning toward them with compassion and curiosity. For those living with chronic fatigue syndrome, this book is a beautiful companion, offering insights on how to stay present with what is, without judgment or resistance. Chödrön’s gentle wisdom helps us find peace in the uncomfortable and reminds us that within every limitation, there is the possibility of growth. This aligns perfectly with the practice of pacing—of learning to live within constraints, not with bitterness, but with an open heart.

    Book Recommendation: Tony Bernhard, How to Be Sick

    Another indispensable resource is Tony Bernhard’s How to Be Sick. As someone who has lived with chronic fatigue syndrome herself, Bernhard offers a deeply compassionate, Buddhist-inspired approach to living with illness. Her book provides practical advice on how to cultivate equanimity, mindfulness, and self-compassion while dealing with the daily struggles of chronic illness. Bernhard’s words echo the heart of pacing—teaching us how to manage our energy, honor our limitations, and find meaning even when life feels limited. For anyone searching for a path through the often overwhelming challenges of ME/CFS, How to Be Sick is both a guide and a comfort, offering tools to help transform suffering into wisdom and peace.

  • The Six Types of Courage in the Journey with Chronic Fatigue Syndrome

    The Six Types of Courage in the Journey with Chronic Fatigue Syndrome

    For those of us living with post-viral chronic fatigue syndrome (ME/CFS), the path we walk is not a simple one. Each day brings its own set of challenges, often invisible to the outside world but deeply felt within. Yet, amid the fatigue, the uncertainty, and the pain, there are moments where we are called to draw on reserves of strength we didn’t even know we had. Courage, in its many forms, becomes a quiet companion on this journey.

    As I reflect on the Six Types of Courage, I am reminded that courage isn’t always the grand, heroic act we see in stories. Sometimes it is found in the smallest actions, the quietest moments, and the internal shifts of perspective that allow us to keep moving forward. Let me share how each of these types of courage has come to life in my experience, and perhaps in yours, as we navigate the complexities of chronic illness.

    Physical Courage

    Living with ME/CFS requires a deep well of physical courage. On the days when even getting out of bed feels like a monumental task, there is a certain bravery in simply continuing. To keep going, not by pushing beyond our limits, but by embracing our body’s need for rest, balance, and awareness, is its own form of resilience. The courage to honor what our body is telling us, to move slowly and deliberately through the fatigue, is often invisible to others—but it is no less powerful.

    I’ve learned, often the hard way, that physical courage isn’t about “fighting” the illness. Instead, it’s about recognizing that even the act of getting through a day, with gentle awareness of my body’s limits, is a courageous act of self-care.

    Social Courage

    One of the most difficult aspects of living with chronic illness is feeling misunderstood by those around us. Social courage asks us to be unapologetically ourselves, even when we feel like our world is shrinking. It takes bravery to share our reality with others, to say, “This is who I am right now,” even when we worry about judgment or pity.

    For me, social courage has meant being honest about my limitations, even when it’s uncomfortable. It’s meant declining invitations or stepping back from commitments without feeling the need to apologize. In a world that often celebrates busyness and productivity, social courage allows us to stand firm in our truth, even when it doesn’t align with society’s expectations.

    Moral Courage

    Moral courage comes into play when we choose to do what’s right for our well-being, even when it’s not popular or easy. It might mean saying no to well-meaning advice that doesn’t resonate, or it might mean standing up for ourselves in medical settings, advocating for the care we know we deserve.

    In my own journey, I’ve had to practice moral courage by trusting my intuition, even when others disagreed. Whether it was turning down treatments that didn’t feel right for me, or advocating for pacing and rest in a world that pushes us to keep going, moral courage has been about honoring my inner knowing and standing up for my own health and well-being.

    Emotional Courage

    Emotional courage asks us to feel everything—without guilt or attachment. Living with chronic illness brings a rollercoaster of emotions, from frustration and sadness to moments of peace and even joy. It takes real bravery to allow ourselves to feel the depth of these emotions, without judgment.

    For those of us living with ME/CFS, there is often a fear of being consumed by the negative emotions that come with illness. But emotional courage teaches us that by allowing ourselves to fully experience these feelings, we create space for healing. It’s okay to feel angry, to feel sad, to grieve the life we once had. And it’s equally okay to feel moments of joy, to savor the small victories without fear of losing them. Emotional courage is the bridge between feeling and acceptance.

    Intellectual Courage

    There is a constant need to learn, unlearn, and relearn when living with chronic illness. Intellectual courage encourages us to stay open, to question what we think we know about our illness, and to be willing to adapt as new information comes to light.

    In my own life, this has meant learning to let go of certain beliefs—like the idea that I must always be productive to have value. It has meant embracing new ways of thinking about rest, about healing, and about what it means to live a meaningful life, even in the face of limitations. Intellectual courage reminds us that growth is always possible, even when we feel stuck.

    Spiritual Courage

    Spiritual courage is perhaps the most profound of all. It asks us to live with purpose and meaning, even when our outer world feels small. For me, spiritual courage has been about embracing the stillness that chronic illness brings, finding the deeper meaning in quiet moments, and trusting that this path, though difficult, has its own beauty.

    Living with ME/CFS has drawn me inward, toward a heart-centered approach to life. Spiritual courage has helped me see that even when my body is weak, my spirit can remain strong. It’s about connecting with something larger than myself, whether that’s through mindfulness, prayer, or simply finding peace in the present moment. It’s about living with purpose, even when the world outside feels far away.

    As I reflect on these six types of courage, I am reminded that each of them plays a role in the journey we are on. Courage doesn’t always roar. Sometimes, it is the quiet voice at the end of the day saying, “I will try again tomorrow.” For those of us living with chronic fatigue syndrome, courage is found not in grand gestures, but in the small, everyday acts of resilience, hope, and self-compassion.

    We are all courageous, in ways both seen and unseen. Let us honor that courage in ourselves and in each other, as we continue to walk this path with grace, gentleness, and the quiet strength that comes from within.

    🙏🕊️🙏

  • Managing Post-Exertional Malaise: Finding Balance and Peace in Life with ME/CFS

    Managing Post-Exertional Malaise: Finding Balance and Peace in Life with ME/CFS

    A Gentle Reflection on Pacing, Rest, and Navigating the Challenges of Chronic Fatigue Syndrome

    There are days when the body speaks softly, a whisper of weariness that hints at the storm ahead. And though we move carefully, mindful of each step, there are moments when the smallest effort—a turn of the mind, a spark of emotion—awakens something deeper. This is the dance with post-exertional malaise, the hidden tide that comes and goes, often when we least expect it.

    Gentle Reminder: Take Care of Yourself

    This post is lengthy, and it’s important to honor your pacing needs. Feel free to read a little at a time, take breaks, and come back to it when you’re ready. Your well-being is paramount, even as you engage with information that supports your journey.

    In this slow unfolding, I’ve learned the art of listening. Not just to the body’s loud protests, but to the subtle shifts that rise like shadows before a dusk. It’s a practice, really—this gentle balancing act of life. Pacing myself through the hours, I find that it’s not about doing as much as I can, but rather, doing only as much as I must, and stopping long before the weight of fatigue pulls me under.

    Some days, I count my energy like a miser with gold, tucking it away in small corners, resting in the quiet between breaths. I know now that to keep moving without pause is to invite the flood, so I rest—not in surrender, but in reverence. It’s a kind of devotion, to honor these limits as something sacred, to see the necessity of stillness as part of the rhythm of being. I don’t always succeed. But when I do, I glimpse a peace that feels fragile, yet profound.

    And when the world presses in with its demands, I remind myself that it’s okay to say no, or not now. There is a quiet strength in bowing out, in knowing that tomorrow will ask more of me than today ever could, and I must be ready. There is also grace in understanding that not every task, not every moment, requires my full self. I can do less, and in doing less, I give myself more space to breathe, to be.

    There are the days after—the days when the fog of PEM descends like a heavy mist over the mind, the limbs. When it comes, I am learning not to fight it. I lie still, like a tree after the storm, gathering strength in the pause. I have found that recovery is an art, as delicate as anything else. Resting, not out of defeat, but out of wisdom, out of love for the body that has carried me through so much already. The act of resting becomes an offering of peace, a gift I give myself in this long, uncharted journey.

    And so, I move slowly, gently, always aware of the fine thread that connects exertion and ease, action and rest. I have begun to cherish the quiet moments of pause, the spaces where life still hums softly, even in the absence of movement. These are the moments when I remind myself that managing this strange, invisible storm is not about conquering it, but learning to live alongside it, to move with it as gracefully as I can. There is beauty here, too—a beauty in the stillness, in the small victories of simply being.

    In those moments, I find a sense of peace that is mine to keep. And in that peace, I remind myself that even on the hardest days, I am enough.And so, as I offer these thoughts, I send with them a quiet wish for your well-being. May you find moments of rest that nourish you deeply, and may the days of ease, however fleeting, linger softly in your memory. If you ever feel the weight of this journey pressing too hard, know that you are not alone.

    Dear friends,

    I know these days may feel heavier than usual. The storm outside has passed, but inside, your bodies may feel as though they’re weathering one of their own. Post-exertional malaise (PEM) comes like that—quiet and uninvited, a deep exhaustion that touches every part of you. Whether it’s the physical toll of surviving the hurricane or the emotional weight of the aftermath, you’re feeling it now, maybe more intensely than you have in years.

    Please know that what you are experiencing is valid. You’ve already shown such strength, simply by navigating these storms and their many demands. But right now, in this moment, the strongest thing you can do is rest. Not as a surrender, but as a way of caring for yourself in the most compassionate way possible. Rest, because your body is asking for it. Rest, because this is how you heal.

    Pacing is not easy when the world around you spins in chaos, but I encourage you to listen to the subtle signs your body gives. You don’t have to meet every demand or engage with every worry. It’s okay to step back, to breathe, and to honor your limits. In doing less, you are doing what is necessary to recover.

    If the fog of PEM feels too thick to see through, know that it will lift. Maybe not all at once, but in small, tender ways. There is stillness, there is peace, waiting for you on the other side of this exhaustion. You are not alone in this experience—many of us are moving slowly through these same waters, learning the rhythm of rest, of patience, of letting go.

    For now, take each moment as it comes. Let yourselves be. Let yourselves rest. And in that rest, know that you are enough. You are resilient. This, too, will pass.

    With all my warmth and understanding,
    Richard Silverman

    Feel free to leave your thoughts, your questions, or simply your presence here—I will meet you with understandingh and warmth. Together, in our shared quiet, we will honor the pace that life has asked of us.

    🙏🕊️🙏

  • Transforming the Suffering of ME/CFS into a Path of Healing

    For those of us living with post-viral myalgic encephalomyelitis (ME/CFS), the experience of life often feels like moving through a landscape filled with unseen obstacles. There is the fatigue—so heavy, so relentless—that it can feel like a weight we will never shake. There are the moments when even the simplest tasks become insurmountable, and the pain becomes a constant companion, whispering in the background of every day.

    When I first encountered the teaching “Transforming Suffering and Happiness into Enlightenment” by Dodrupchen Jigme Tenpe Nyima, it felt like someone had gently opened a door I hadn’t known existed. At the time, I was entrenched in my own struggle—fighting the fatigue, resisting the pain, angry at the injustice of it all. I didn’t see it then, but my resistance, my frustration, and my desperate need for things to be different were only making me sicker. Each day felt like another battle against my body, and it was exhausting in every sense of the word.

    The teaching introduced me to an entirely different way of relating to my experience. It was an invitation, not to fight against my suffering, but to sit with it, to gently turn toward it with a kind of curiosity. At first, the idea seemed absurd—how could I welcome something that was robbing me of so much? But as I read further, I began to understand that the more I resisted, the more I labeled my suffering as the enemy, the stronger it became. Everything around me had started to feel like an enemy—my body, the illness, even the world itself.

    The first time I truly absorbed the idea that suffering, like anything else, grows stronger with the attention we give it, it was a revelation. I started to realize that I had been feeding my suffering through my resistance. In a way, I was making myself worse by constantly pushing against the reality of what I was experiencing. This was the first eye-opener: that my own mind was contributing to the intensity of my suffering.

    I remember vividly when I decided to start putting this teaching into practice. I had signed up for a meditation class, feeling both hopeful and uncertain, and around that time, I also came across Tony Bernhardt’s book How to Be Sick. Little by little, I began to change how I approached the fatigue and pain. It didn’t happen overnight. In fact, it felt like planting seeds in the darkest soil—there were days when nothing seemed to grow, and I wondered if this new approach would ever bear fruit. But gradually, something did begin to shift.

    The more I learned to observe my suffering without immediately pushing it away, the more space I created around it. It wasn’t that the fatigue disappeared—far from it—but my relationship to it began to change. Instead of seeing every wave of exhaustion as something to fight, I started to meet it with a kind of quiet acceptance. This didn’t mean I liked it, but I stopped resisting it quite so fiercely. In time, the constant anger and frustration began to soften.

    As I practiced more, something else began to emerge—equanimity. I began to realize that the less I resisted both the suffering and the rare moments of joy, the steadier I felt inside. Over the years, my confidence in my ability to face difficulties has grown. There’s a quiet knowing now, a calmness that wasn’t there before, that when challenges arise, I can meet them without being completely swept away.

    Of course, this is still a work in progress, and I expect it will be for the rest of my life. Some days are harder than others, but the difference is that I no longer see the hard days as failures. They are simply part of the ebb and flow. And in learning to embrace both the suffering and the moments of peace, I’ve discovered a kind of strength that doesn’t come from fighting but from surrendering—surrendering to the reality of my experience without letting it define me.

    This teaching has shown me that suffering, far from being something to avoid, can become a profound teacher. When we allow ourselves to meet it with openness, we can begin to transform it. It doesn’t mean the pain or the fatigue will disappear, but our relationship to it changes. We become less fragile, more resilient. Over time, the suffering no longer feels like something that has complete power over us.

    For those of us living with ME/CFS, this teaching offers a way to shift the narrative. Instead of seeing our illness as something that has taken everything from us, we can begin to see it as part of our path. By practicing mindfulness, by gently turning toward our suffering instead of away from it, we begin to cultivate a heart that is steady, a heart that can hold both the fatigue and the fleeting moments of ease without being shaken by either.

    It’s a slow process, and it requires patience—patience with ourselves and with the process of healing. But there is a quiet beauty in this work. Each time we meet our suffering with compassion, we are planting a seed. And while the fruits may take time to blossom, they do eventually grow.

    For those of you who are interested in exploring this teaching more deeply, I encourage you to take your time with it. Let it sit with you, and consider how it might apply to your own experience. And if you’d like to read the full teaching by Dodrupchen Jigme Tenpe Nyima, you can find it freely available online here.

    This journey isn’t easy, but together we can learn to transform our suffering into something that doesn’t just weigh us down but also lifts us toward a deeper understanding of ourselves and the world around us.

    🙏🕊️🙏

    Biography of Dodrubchen Jigme Tenpai Nyima

    Dodrubchen Jigme Tenpai Nyima, the Third Dodrubchen, was born in 1865 in the sacred Ma valley of Golok, Tibet, into a family deeply rooted in the spiritual lineage of his father, Dudjom Lingpa. From the very beginning, his life was marked by extraordinary recognition, with his teachers and mentors seeing in him the incarnation of profound wisdom. But his journey was not without struggle. As a young boy, he found study difficult, often frustrated to the point of tears. Yet, through perseverance and the support of his teachers, his understanding blossomed, revealing a deep capacity for spiritual insight.

    What makes Dodrubchen Jigme Tenpai Nyima so relatable is his humanity. Even as a master of Tibetan Buddhist teachings, he encountered challenges that shaped him into the teacher he became—a man of great compassion, who dedicated his life to training countless students in both Nyingma and Sarma traditions. His accomplishments were vast: he rebuilt his monastery, composed celebrated commentaries, and gave teachings tirelessly. And though he eventually retreated into seclusion due to his failing health, he continued to guide his closest disciples with unwavering dedication. His life, both ordinary and extraordinary, stands as a testament to the power of persistence, humility, and the profound depth of spiritual commitment.

    About Lotsawa House

    Lotsawa House is a rich and invaluable resource for those seeking authentic Tibetan Buddhist teachings. The website offers an extensive collection of translations from Tibetan texts, including teachings from many great masters such as Dodrubchen Jigme Tenpai Nyima. This is where the teaching “Transforming Suffering and Happiness into Enlightenment” can be found, along with countless other treasures, all freely available for anyone to access.

    Whether you are new to Tibetan Buddhism or have been practicing for years, Lotsawa House provides a space to explore the wisdom of these great teachings. The site is dedicated to making the profound texts of Tibetan Buddhism accessible to a global audience, offering translations in English and other languages, so that anyone, regardless of background, can benefit from these ancient spiritual insights. It’s a place where the wisdom of the Tibetan masters is preserved and shared, so that all who seek it may find the path to peace and understanding.

    You can explore the full collection of teachings and discover more about the great teachers who brought them to life by visiting Lotsawa House.