Christina Baltais

@christinabaltais | contributor
Hi! My name's Christina and I'm an artist and ME/CFS advocate from Toronto, Ontario. I write to raise awareness, and to help myself and others process the hardships that come along with this disease. Instagram: wordsasmedicine

Bringing Visibility to Myalgic Encephalomyelitis Through Art

This May 12th is the virtual global #MillionsMissing protest for myalgic encephalomyelitis (ME) health equality. We’re asking for increased government funding for research, clinical trials, medical education and public awareness. This year I decided to create a body cast series called Broken Body/Enduring Spirit to help bring more visibility to the lives affected by this disease. The series is a sculptural representation of my experiences living with myalgic encephalomyelitis, and explores the relationship between myself, my body and the outside world. My story of ME is the classic textbook presentation of this disease. I contracted an awful surreal flu that made the homeostasis of my body go haywire — and I’ve been in viral purgatory ever since. While I’m only considered “mild” on the spectrum of this disease, it detrimentally impacts every aspect of my life. Broken Body Broken Body symbolizes the day in, day out unrelenting grind of a survival state. ME is a multi-systemic, neuroimmune disease, characterized by a plethora of symptoms which fatigue is but one of. The fatigue of ME is akin to living under house arrest, incarcerated by an inexplicable bodily collapse. There is no Alcatraz as inescapable as a body with ME. In this primal state you can can feel emotionally battered and weary. It’s a disease that strips away your external life, until all that remains is your raw spirit, exposed to the external elements. It feels like constantly trying to salvage and stitch together what precious fragments of health remain. There’s a constant fear of collapse, and shame sinks into the cracked bedrock of your identity. There’s also a sustained battle against the ubiquitous falsehoods surrounding ME—ones of rejection, ridicule and judgment— because it is a contested illness. This only adds salt to the gaping wounds. There’s another painful part. It will seem like almost any other opinion carries more weight than your own, and your capacity for autonomous judgment will be viewed as less than a credible source. This is especially true if you’re a woman or person of color due to the gender and racial biases that exist in our healthcare systems. Living with ME requires a strength beyond our physical sense of the word. Most of us lose our jobs, some of our friends, the capacity to enjoy simple activities and a great degree of our freedom to act spontaneously. Along with the grief of these losses, and deep within my fractured body, lies a burning knowledge. If I ever weather this illness, I will certainly have the grit and determination to pursue every dream held close to my heart. Enduring Spirit Living with ME is a balancing act of holding in one hand the hope of finding something that will help, and in the other—acceptance of a new disabled reality. There isn’t a day that goes by that I don’t wish I was healthy again. But I’m also coming to the realization, that this in-limbo, hopefully transitory place—is life, and my life right now. My body might feel broken, but I also want to connect to it in more ways than just resentment, anger, frustration and grief. Not to diminish these valid emotions in any way, but to make room for another way of relating to my chronically ill body. Enduring Spirit is about this very space, and it embraces rest and restoration, in the face of capitalism and productivity. It’s here that I call back my power, self-compassion, and self-worth—and wash them over my experiences of living with ME. I also remind myself that I am enough in this moment and every moment, just as I am. While by no means a cure, it does help me cope. Its a way to remind myself I am still me, even if I am unable to fully express myself in the world in the ways that my heart yearns to. I don’t know how long I will have to navigate the war zone of ME. But I do know that the landscape of ME is changing. A worldwide pandemic has brought post-viral disease to the forefront like no other time in history. I believe we are at cusp of a new era that will have a firmer grasp on the challenges and medical needs of the ME community. I hope you’ve gained a deeper understanding of the experience of living with mild ME shown in a more creative way. For more information on advocacy and research, be sure to check out The MEAction Network and The Open Medicine Foundation. You can view the corresponding Youtube video here.

Bringing Visibility to Myalgic Encephalomyelitis Through Art

This May 12th is the virtual global #MillionsMissing protest for myalgic encephalomyelitis (ME) health equality. We’re asking for increased government funding for research, clinical trials, medical education and public awareness. This year I decided to create a body cast series called Broken Body/Enduring Spirit to help bring more visibility to the lives affected by this disease. The series is a sculptural representation of my experiences living with myalgic encephalomyelitis, and explores the relationship between myself, my body and the outside world. My story of ME is the classic textbook presentation of this disease. I contracted an awful surreal flu that made the homeostasis of my body go haywire — and I’ve been in viral purgatory ever since. While I’m only considered “mild” on the spectrum of this disease, it detrimentally impacts every aspect of my life. Broken Body Broken Body symbolizes the day in, day out unrelenting grind of a survival state. ME is a multi-systemic, neuroimmune disease, characterized by a plethora of symptoms which fatigue is but one of. The fatigue of ME is akin to living under house arrest, incarcerated by an inexplicable bodily collapse. There is no Alcatraz as inescapable as a body with ME. In this primal state you can can feel emotionally battered and weary. It’s a disease that strips away your external life, until all that remains is your raw spirit, exposed to the external elements. It feels like constantly trying to salvage and stitch together what precious fragments of health remain. There’s a constant fear of collapse, and shame sinks into the cracked bedrock of your identity. There’s also a sustained battle against the ubiquitous falsehoods surrounding ME—ones of rejection, ridicule and judgment— because it is a contested illness. This only adds salt to the gaping wounds. There’s another painful part. It will seem like almost any other opinion carries more weight than your own, and your capacity for autonomous judgment will be viewed as less than a credible source. This is especially true if you’re a woman or person of color due to the gender and racial biases that exist in our healthcare systems. Living with ME requires a strength beyond our physical sense of the word. Most of us lose our jobs, some of our friends, the capacity to enjoy simple activities and a great degree of our freedom to act spontaneously. Along with the grief of these losses, and deep within my fractured body, lies a burning knowledge. If I ever weather this illness, I will certainly have the grit and determination to pursue every dream held close to my heart. Enduring Spirit Living with ME is a balancing act of holding in one hand the hope of finding something that will help, and in the other—acceptance of a new disabled reality. There isn’t a day that goes by that I don’t wish I was healthy again. But I’m also coming to the realization, that this in-limbo, hopefully transitory place—is life, and my life right now. My body might feel broken, but I also want to connect to it in more ways than just resentment, anger, frustration and grief. Not to diminish these valid emotions in any way, but to make room for another way of relating to my chronically ill body. Enduring Spirit is about this very space, and it embraces rest and restoration, in the face of capitalism and productivity. It’s here that I call back my power, self-compassion, and self-worth—and wash them over my experiences of living with ME. I also remind myself that I am enough in this moment and every moment, just as I am. While by no means a cure, it does help me cope. Its a way to remind myself I am still me, even if I am unable to fully express myself in the world in the ways that my heart yearns to. I don’t know how long I will have to navigate the war zone of ME. But I do know that the landscape of ME is changing. A worldwide pandemic has brought post-viral disease to the forefront like no other time in history. I believe we are at cusp of a new era that will have a firmer grasp on the challenges and medical needs of the ME community. I hope you’ve gained a deeper understanding of the experience of living with mild ME shown in a more creative way. For more information on advocacy and research, be sure to check out The MEAction Network and The Open Medicine Foundation. You can view the corresponding Youtube video here.

Using Art to Bring Visibility to Myalgic Encephalomyelitis

This May 12 is the virtual global #MillionsMissing protest for myalgic encephalomyelitis (ME) health equality. We’re asking for increased government funding for research, clinical trials, medical education, and public awareness. I decided to create a handmade collage series called Inner Landscapes, to help bring more visibility to the lives affected by this disease. Inner landscapes is a 35 piece collage series that explores the emotional terrain of chronic illness; the good, the bad, and the complicated. Below I’m be talking about five of the collages; and the entire series can be viewed on my Instagram page. If Prayers Were Birds Like a cage door, my heart will open, to set free a flock of captive birds. One by one, I will cradle their soft wings, whispering the same prayer over each, until the last bird is sent off to the sky. The most loyal of messengers, they fly over stretches of hills, winding rivers, and mountain peaks, reaching distant lands only known to them. Each bird carries and sings the same song I whispered to them once, now so long ago. It is both a tender and solemn melody; one that tugs on the sleeves of hearts who will listen. Sung from deep within their chest, comes a story about captivity and of longing for the sky. The saddest note holds the pain of remembering freedom, nearly forgotten after years of confinement. It’s both prayer and plea — to find a better way for the ones oppressed by the cages in our world. It’s also an anthem of kindness and duty, to care for one another with the time we are given. The birds of my heart will sing this truth for as long as the winds carry their steady wings, and their song blossoms open the hearts of all who listen. Memories as Sustenance When my health crossed over the threshold into ME/CFS, I entered uncharted territory. The confines of my body created a barren land, no longer filled with the lush experiences my soul had once relished in. One has no control or choice in such a place, but only to tread onward, through desolate expanses of time and isolation. Parched and starving for sustenance, I turn to my heart. The heart can act as a portal, and can access the memories and moments of love residing there. I visit them like one indulges in a cup of tea or a long warm bath; I sink deep. For I am a weary traveler, and soaking in such recollections helps the miles pass. They also bring comfort to my spirit, helping me walk back home to myself, when unforgiving lands have made me forget who that is. Resiliency Anytime the earth is paved over, the life force of nature becomes squelched. Soon traces of what once was, has all but vanished. But nature, like the human spirit, must forge a new way. Over time, cracks form on the surface; cracks that light beams can burst though for new life. Roots can reform, grounding and pushing against all odds to claim space in the world once more. This growth is not an overcoming of an obstacle, but a study in how to thrive relative to it. For the human spirit, it’s a return and resurrection of one’s self — a transformed self. One that develops a strength to endure such terrain. It blossoms with perseverance and resiliency by seizing the light from cracks in the walls of great hardship. These walls are ME/CFS for me, and I embrace the shreds of light that come my way. Isolation Existing within our own confined little worlds, we are lonely and staring out into the expanse at other little worlds just like ours. There is a kinship to be found amidst such isolation, because we share the same captor: ME/CFS. Standing tall in solidarity, with our lanterns burning bright, we illuminate the constellations that wind and connect one another over stretches of darkness. So when we are forced to stare into the burning sun of our suffering — with nothing to eclipse it — we remember each other. We remember the other worlds just like ours, with people staring into the same burning sun. We remember our united front standing in the dead of night, with all the tiny lanterns glowing, and unwavering, for change. We are all part of the same solar system, and may never touch or see one another in our lifetimes. But together, we continue to do everything we can do, calling forth the macrocosm for help and change. Handle With Care Compassion is an act of reaching out to ourselves. Maintaining self-compassion is difficult when there is so much judgment, stigma, and disbelief surrounding ME/CFS from the outside world. In these moments I recalibrate myself to the quiet spaces between the noise, to remember my true nature. It is here that I hold room in my heart for the great hardship I’m going through. This loving embrace brims with a softness the world does not have. I also immerse my spirit in nature, my truest ally. I feel its secret kinship to my heart through the birds, flowers, and trees — their whispers repeating the same truth to my loneliness. I will forever be held by the earth and cherished by the sun. I hope you’ve gained a deeper understanding of ME/CFS, shown in a more creative way. For more information on advocacy and research, be sure to check out The MEAction Network and The Open Medicine Foundation.

Using Art to Bring Visibility to Myalgic Encephalomyelitis

This May 12 is the virtual global #MillionsMissing protest for myalgic encephalomyelitis (ME) health equality. We’re asking for increased government funding for research, clinical trials, medical education, and public awareness. I decided to create a handmade collage series called Inner Landscapes, to help bring more visibility to the lives affected by this disease. Inner landscapes is a 35 piece collage series that explores the emotional terrain of chronic illness; the good, the bad, and the complicated. Below I’m be talking about five of the collages; and the entire series can be viewed on my Instagram page. If Prayers Were Birds Like a cage door, my heart will open, to set free a flock of captive birds. One by one, I will cradle their soft wings, whispering the same prayer over each, until the last bird is sent off to the sky. The most loyal of messengers, they fly over stretches of hills, winding rivers, and mountain peaks, reaching distant lands only known to them. Each bird carries and sings the same song I whispered to them once, now so long ago. It is both a tender and solemn melody; one that tugs on the sleeves of hearts who will listen. Sung from deep within their chest, comes a story about captivity and of longing for the sky. The saddest note holds the pain of remembering freedom, nearly forgotten after years of confinement. It’s both prayer and plea — to find a better way for the ones oppressed by the cages in our world. It’s also an anthem of kindness and duty, to care for one another with the time we are given. The birds of my heart will sing this truth for as long as the winds carry their steady wings, and their song blossoms open the hearts of all who listen. Memories as Sustenance When my health crossed over the threshold into ME/CFS, I entered uncharted territory. The confines of my body created a barren land, no longer filled with the lush experiences my soul had once relished in. One has no control or choice in such a place, but only to tread onward, through desolate expanses of time and isolation. Parched and starving for sustenance, I turn to my heart. The heart can act as a portal, and can access the memories and moments of love residing there. I visit them like one indulges in a cup of tea or a long warm bath; I sink deep. For I am a weary traveler, and soaking in such recollections helps the miles pass. They also bring comfort to my spirit, helping me walk back home to myself, when unforgiving lands have made me forget who that is. Resiliency Anytime the earth is paved over, the life force of nature becomes squelched. Soon traces of what once was, has all but vanished. But nature, like the human spirit, must forge a new way. Over time, cracks form on the surface; cracks that light beams can burst though for new life. Roots can reform, grounding and pushing against all odds to claim space in the world once more. This growth is not an overcoming of an obstacle, but a study in how to thrive relative to it. For the human spirit, it’s a return and resurrection of one’s self — a transformed self. One that develops a strength to endure such terrain. It blossoms with perseverance and resiliency by seizing the light from cracks in the walls of great hardship. These walls are ME/CFS for me, and I embrace the shreds of light that come my way. Isolation Existing within our own confined little worlds, we are lonely and staring out into the expanse at other little worlds just like ours. There is a kinship to be found amidst such isolation, because we share the same captor: ME/CFS. Standing tall in solidarity, with our lanterns burning bright, we illuminate the constellations that wind and connect one another over stretches of darkness. So when we are forced to stare into the burning sun of our suffering — with nothing to eclipse it — we remember each other. We remember the other worlds just like ours, with people staring into the same burning sun. We remember our united front standing in the dead of night, with all the tiny lanterns glowing, and unwavering, for change. We are all part of the same solar system, and may never touch or see one another in our lifetimes. But together, we continue to do everything we can do, calling forth the macrocosm for help and change. Handle With Care Compassion is an act of reaching out to ourselves. Maintaining self-compassion is difficult when there is so much judgment, stigma, and disbelief surrounding ME/CFS from the outside world. In these moments I recalibrate myself to the quiet spaces between the noise, to remember my true nature. It is here that I hold room in my heart for the great hardship I’m going through. This loving embrace brims with a softness the world does not have. I also immerse my spirit in nature, my truest ally. I feel its secret kinship to my heart through the birds, flowers, and trees — their whispers repeating the same truth to my loneliness. I will forever be held by the earth and cherished by the sun. I hope you’ve gained a deeper understanding of ME/CFS, shown in a more creative way. For more information on advocacy and research, be sure to check out The MEAction Network and The Open Medicine Foundation.

Photography Showing Life With Chronic Fatigue Syndrome

I love the work of artist Johan Deckmann. He uses books and their titles to convey universally relatable truths about life. His images are powerful and thought-provoking. They directly inspired me to create my own book series on myalgic encephalomyelitis (ME), more commonly known as chronic fatigue syndrome (CFS), to help raise awareness. The “ME Anthology Series” helped me express a lot of the heavy feelings that come with living with this disease —whether it be grief, the trauma of being disbelieved, the experience of not having access to ME-literate doctors, and the fact that no treatments exist for a disease that is so disabling even in it’s mildest forms. It makes me have a lot of fear surrounding my future. With this series, I wanted to communicate a sense of urgency for change that permeates our entire community. We are all so sick, and the status quo is keeping us that way. This image conveys the experience of how ME forcibly shrinks the walls of your life down. The dreams and plans you once had become skinny, abridged and adapted versions of what remains. It’s a catastrophic downsizing of sorts, with omnipresent grief. This is by far my greatest struggle with ME, because chapters and chapters have been removed from what I thought my life would be like. This image represents the likelihood of being disbelieved. This disconnect can happen even when you’re direct, articulate and honest about what you’re experiencing. There will always be others who judge, invalidate and undermine the reality of your symptoms. This is especially true for those living with invisible illnesses like ME. The emotional toll of not being believed causes deep pain and is extremely traumatic. When disbelief comes from a physician or specialist, it can impede access to health care services and be a detriment to one’s own health. If it happens with friends or family, it can erode relationships. Over time, this creates further isolation and an atmosphere of shame and stigma for the person living with ME. Unfortunately, this is a common experience in the community. It’s also one that has impeded research progress over the decades. To this day, our community is still opposing psychological theories despite the growing body of scientific literature demonstrating physiological abnormalities. This image highlights the absence of ME in medical school curriculums. It seems the majority of physicians have their first encounter with ME from their exam rooms, instead of classrooms. This creates a knowledge gap, which directly increases the length of time it takes for patients to get a proper diagnosis. This delays critical education to be passed along to the patient, such as pacing (the best strategy known to improve quality of life in people living with ME). This photo also represents how many patients go into appointments, armed with articles and research in hand, in hopes their doctors will learn, understand and help them. When the quality of your life is at stake, becoming an expert on ME is the only rational response. Stuart Murdoch (lead singer of Belle and Sebastian, and ME advocate) summed it up best with this tweet: “My ME/CFS is 30 years old. Happy birthday, ailment! For 30 years I have been trying varied and expensive remedies. The doctors have said ‘well, you know more about this thing than we do’ and ‘I’m not sure I can get behind what you’re trying… but I don’t have any other ideas.’” This image symbolizes the experience of being diagnosed with ME, followed by the stark realization that no FDA-approved treatment exists. It’s a nightmarish reality to be plucked from the world and be physically incapacitated, only to be told, “there’s nothing we can do.” For a disease that affects the regulation of the immune system, musculoskeletal system, cardiovascular system, central nervous system, gastrointestinal system, cognitive functioning and auditory/visual centers — this is incomprehensible. ME affects the lives of millions worldwide, and a lack of an FDA-approved treatment is not enough for us. This image strikes a painful chord in our community. ME recovery stories are rare, with estimated rates at only 5%. This means that when you develop ME, the chances of being affected by it for the rest of your life is almost a guarantee. When patients are severely ill and have limited mobility for decades, feelings of despair and hopelessness arise. It is to no surprise that suicide rates are estimated to be six times higher in the ME population compared to the general population. It has been listed as the cause of death in high profile cases like Merryn Crofts and Sophia Mirza. It is heartbreaking, and unless adequate funding is allocated for ME research, we will keep losing our friends. This image highlights the NIH’s (National Institutes of Health) key role in the neglect of the ME crisis since the disease captured headlines in the 1980s. Adriane Tillman, editor for #MEAction writes: “For the past 20 years, the NIH has funded ME at an average of $5 million per year, which increased to $14 million two years ago. Considering the prevalence and severity of the disease, NIH research for ME/CFS should be at $188 million annually, which is commensurate with diseases of similar burden. If you add up all the funding that the NIH has allocated to ME/CFS research over the past two decades, it wouldn’t reach the total amount that the NIH should be spending on the disease in one year. The absence of research and knowledge about ME/CFS has allowed stigma to maintain a stranglehold on the disease, contributing to confusion, apathy and misinformation around the disease, leading to a complete lack of support for people with ME/CFS from doctors or social services.” I hope the “ME Anthology Series” has helped shed some light on the current climate of the ME crisis. Want to help with ME advocacy? Join the #NotEnough4ME Campaign . Want to contribute to ME research? Visit The Open Medicine Foundation . To see Johan Deckmann’s work, click here .

How I'm Using Photography For Myalgic Encephalomyelitis Awareness Week

This May 5 to May 12 is the global #MillionsMissing protest for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) health equality. We’re asking for increased government funding for research, clinical trials, medical education and increased public awareness. I am one of estimated 17 to 24 million affected globally with this disease, and I am using photography inspired by my experiences to help bring more visibility to our community. This photography series was shot from my bed, and is called “Seasons of ME.” It is a reflection on the passage of time when you are lying in bed sick and explores how each season can be a metaphor for this disease. 1. Fall: Descent/Fear/Loss of Control I remember the first time I noticed my health beginning to unravel. It started with subtle whispers that could be shrugged off. By the time the intrinsic sirens in my body blared stop — that something was wrong — my health had spiraled beyond any semblance of control. My life as I knew it slipped from my grasp, no matter how hard I desperately clutched to keep it. Living became a freefall into the unknown because ME is an illness with no answers or treatment. Now, every time I have a flare-up, I must relinquish control and my fears ask the same questions: will this time progress the disease? Will my health return to its baseline, or slip farther from me? These fears are real because sometimes it has and sometimes it hasn’t. 2. Winter: Survival/Isolation/Hibernation I’ve had flare-ups spanning days, weeks, months, even years. A heaviness permeates every cell of my body, and movement is rationed for the absolute necessities. I contract myself and wait out the storm, one imperceptible to the naked eye but one that can be relentless, cold and long. I am fortunate to have moderate ME and can carry out my basic survival needs when this happens. Twenty-five percent of those living with ME cannot. They are severely affected and remain in this perpetual state of hibernation. Many are too weak to speak, to eat and cannot be touched by another human being because of excruciating pain it can elicit. Sound and light trigger this pain as well, and many cannot tolerate the stimuli of another person in the same room. This is often difficult as they rely on caregivers — and in many cases, family members — for their care. The storm they endure daily remains unseen to the entire world because they cannot leave their beds. Beds some have died in from the disease itself, while others have taken their lives to escape it. Even today, there are people who continue to deny the very existence of ME and its physiological origins. This too has become a part of the storm— a biting wind we have all learned to fight against. 3. Spring: Hope/Renewal On gentler days, there is a revitalization and enlivening of my spirit. These days are equally precious as they are fragile. Many living with ME do not experience them. To have my energy envelope a little bit wider means I can expand a little more back into the world. Every breath I take carries gratitude within it because going from a spectator of life, to becoming a part of it, feels nothing short of a miraculous experience when you live with this disease. I never know how long my visit into the world will last, or when my body’s reins will pull me back and down again. What I do know for certain is how the heart does not hesitate to leap back into the rapture of living when it has been restrained for so long. These moments resuscitate the hope that one day, I will know health and vitality once more, and return to the world and stay. This hope blossoms from deep within myself and feels tangible for me to hold onto. 4. Summer: Freedom/Cure When I think of my future and that of the millions living with ME, I dream of a better quality of life for us all. More importantly, I dream for a cure that breaks the darkness of winter so our summers may return. Where the future is a place saturated with choice and not fear. A time when medical doctors recognize the severity of ME, and regard it with compassion, and offer treatment options at its onset. I want us to live with the freedom of our pasts, freedom one never forgets. I hope for this to be within reach for us all, one day soon. In the meantime, this dream beats within my heart, steady and impenetrable to the depths of winter. You can watch the corresponding video for “Seasons of ME” here: If ME happened to me, it can happen to anyone. This is why we need answers, and why we need change. For more information on advocacy and research, be sure to check out The MEAction Network and The Open Medicine Foundation.

How Netflix's 'Afflicted' Harms the ME/CFS Community

As a person living with ME (myalgic encephalomyelitis) for over a decade now, I eagerly awaited the release of the Netflix docuseries “Afflicted.” A beloved member of the ME community named Jamison Hill would be featured throughout it. Everyone believed it would be another platform used to contribute to the change we’ve all been striving for. I watched the entire series from start to finish. It follows the lives of Bekah, Carmen, Jamison, Jake, Star, Jill and Pilar, who, according to the IMDb description, live with “bizarre” chronic illnesses. The episodes were filmed in a reality TV style, with each person searching for answers and pursuing various treatments. I related strongly to the emotional oscillations between loss, grief, isolation, desperation and uncertainty portrayed in many of their stories. This connection I felt was unfortunately overshadowed by the very palpable undercurrent of skepticism throughout the entire series. It was clear “Afflicted” was made about the chronically ill, but it was not made for us. In a nutshell their thesis was: Can we really believe these people? The mind is capable of anything, look at how sick these people are because of it! While “Afflicted” introduced ME to a greater audience, it did so deliberately for viewers to question the validity of it, for entertainment purposes. It held people’s suffering up for debate and scrutiny without any context or education. This brought our community exposure, but in the worst possible way. Here are just few quotes taken from the series: “I had a few patients who identified so much with their illness that they really weren’t willing to be cured.” “What your reality in your mind is your reality in our physical world. The mind is where it starts. It’s very, very powerful.” “They don’t want to be sick, but in an attempt to solve the problem, they’ve taken on the sick role and they’ve crowded out everything else in their life.” “If you see somebody has a chronic illness… and if actual symptoms seem to only appear in certain contexts, let’s say, when it benefits them, it does make you wonder what is the role of the symptom.” “You can be deluded that you are sick. You can believe you’re sick when in fact you’re not sick.” To say these remarks are deeply problematic would be an understatement. They blatantly ignore the lengthy history of nearly every invisible illness being attributed to variations on the rhetoric “it’s all in your head”— until science proved otherwise. They are a painful reminder of the ever-present distrust surrounding invisible illness, in a world of able-bodied people. History is simply repeating itself but with a new crop of illnesses. You can now watch an entire series of chronically ill people at the mercy of others “believing them.” Why Being Believed Matters On the surface, one could argue, who cares if others believe you? With regards to chronic illness, the stakes are too high and we have to care. Being believed could mean the difference between having a roof over your head, versus being homeless. Not being believed could give rise to, or escalate, emotional abuse in relationships. Spousal abandonment is a real thing and is far more common when the spouse affected is a woman (ME affects four times as many women as men). It’s also the difference between obtaining equitable healthcare and research funding, or neither. Not being believed has perpetually stalled growth in both facets for ME over decades. When we consider the psychological toll of not being believed, its impact on suicide risk is huge. We know the incidence of suicide is higher in patients with ME than that of the general population. A recent exploratory study showed that suicidal ideation in ME patients is the consequence of having a chronic, misunderstood illness. It is to no surprise then why there were warnings throughout social media to not watch “Afflicted” if you are in a vulnerable place. Other side effects of the series have included people’s chronic illnesses being attacked on Reddit and Twitter. There were even polls created to judge whether you believe individual participants in the film are actually sick. The film has added more fuel to the fires of disbelief so many of us are already up against every day. Fortunately, there were moments of belief and incredible support shown in “Afflicted.” The unconditional love and devotion Jamison’s mother had for him brought me to tears. Bekah’s brother and her boyfriend Jesse showed a level of dedication to improving her quality of life that did too. (On a side note, I would live for a spin-off of Bekah and Jesse making music and art together, in their mold-free van, in the desert). How these individuals showed up and faced adversity head on with their loved ones, translated to, “This is our battle, and we fight together.” In direct contrast, were the scenes that had me cringing. Jake’s father was afraid he wasn’t pushing his son hard enough – a son who is severely debilitated from chronic Lyme disease. A thought crossed his mind to throw his son into their cold pool in order to “wake him up.” Another highly triggering scene was when an emotionally detached father spoke cruelly to his son Jeff regarding his wife Pilar’s illness: “I have no empathy for what you are going through at all, and I don’t have pity for your wife.” Later we hear from Jeff’s friend who says to him, “Dude, I would have left that woman a long time ago.” These scenes made me feel the familiar pang in my heart of not being believed. Those who needed compassion desperately were shown none, despite their unbearably difficult circumstances. Why Science in ME Representation Matters Jamison revealed on Twitter that he was kept in the dark regarding the film’s intent, and sold on the idea that “Afflicted” was for our community. He expressed “feeling disappointed and misled.” As a result, he would not participate again if there was to be a second series. There was even a woman who stated on Twitter that she had been approached and interviewed for the series. At the time she had been disappointed she wasn’t chosen. After watching the series, she’s breathed a sigh of relief. At a certain point you have to ask: how could a series fail to represent a community this badly? The answer is the glaring absence of science. Jamison revealed on Twitter the “Afflicted” team did in fact interview leading scientists like Stanford geneticist Ron Davis, and every doctor at the ME symposium. ME scientists had been filmed, but all this footage was cut entirely from the docuseries. Instead the film maintained its focus on Dr. Friedman, whose credentials to speak on ME are never explained. Not only are none of the participants his actual patients, he also has never met one of them. This doesn’t prevent him from reiterating the psychological origins of disease, however. Incorrect facts also come up in “Afflicted” such as, “the vast majority of patients with chronic fatigue don’t have brain inflammation.” Jennifer Brea was quick to correct this on Twitter, by citing a research paper where brain inflammation was found in 100 percent of the ME/CFS patients studied. The fact is, there is tons of scientific literature available on PubMed showing abnormalities in nearly every system of the body in ME. They chose to not include them either, which forces me to draw to the conclusion that science was inconvenient for their predetermined narrative. “Afflicted” missed an opportunity and did a disservice not only to the ME community, but to the chronic illness community as a whole. It is obvious no one on their team lives with a marginalized illness, because the harm the docuseries poses would have been flagged. Truthful representation matters, both in films and in the making of them. This is especially critical when you are showcasing the voices of a marginalized population you do not belong to, or are affiliated with. What does truthful representation look like? It would be listening to what ME patients are facing each and every day. It would be learning the historical significance of our marginalization, the neglect in research funding and ostracizing by our medical systems. It would be understanding the specific obstacles millions of us experience. It’s asking how and what you can do to help. When you pose as an ally to get very intimate access to peoples lives, they’re exchanging their vulnerability for their truth to be told. Gaslighting their experiences for your own agenda undermines their very voices and lives. It is a violation of trust and ethics. It is an exploitation of people’s suffering because the film did not give back to the communities it took from. Such actions raise questions on moral integrity, as the film only contributes to further stigma, shame, trauma and suicide risk in the ME community. What can you do? These are the calls to action #MEAction put forward on their Facebook page: “We have collected some ideas seen in the community and added some options we feel might be helpful. 1. Instead of sharing Afflicted, share the voice of people with ME and/or other illnesses portrayed in #Afflicted. – Share Jamison’s own words in this New York Times article.– Recommend viewing Unrest which can be seen on Netflix as well as many other streaming platforms.– Read Julie Rehmeyer’s book.– Watch Forgotten Plague.– Share any other medium that has moved you that features the person’s own voice. 2. Make your opinion clear on IMDB and other review formats. 3. Write to Netflix. 4. Use caution when sharing Afflicted which might inadvertently lead to increased views.” 5. There’s also a petition going around that you can check out here. If you have any other other calls to action, be sure to share in the comments below.

How Netflix's 'Afflicted' Harms the ME/CFS Community

As a person living with ME (myalgic encephalomyelitis) for over a decade now, I eagerly awaited the release of the Netflix docuseries “Afflicted.” A beloved member of the ME community named Jamison Hill would be featured throughout it. Everyone believed it would be another platform used to contribute to the change we’ve all been striving for. I watched the entire series from start to finish. It follows the lives of Bekah, Carmen, Jamison, Jake, Star, Jill and Pilar, who, according to the IMDb description, live with “bizarre” chronic illnesses. The episodes were filmed in a reality TV style, with each person searching for answers and pursuing various treatments. I related strongly to the emotional oscillations between loss, grief, isolation, desperation and uncertainty portrayed in many of their stories. This connection I felt was unfortunately overshadowed by the very palpable undercurrent of skepticism throughout the entire series. It was clear “Afflicted” was made about the chronically ill, but it was not made for us. In a nutshell their thesis was: Can we really believe these people? The mind is capable of anything, look at how sick these people are because of it! While “Afflicted” introduced ME to a greater audience, it did so deliberately for viewers to question the validity of it, for entertainment purposes. It held people’s suffering up for debate and scrutiny without any context or education. This brought our community exposure, but in the worst possible way. Here are just few quotes taken from the series: “I had a few patients who identified so much with their illness that they really weren’t willing to be cured.” “What your reality in your mind is your reality in our physical world. The mind is where it starts. It’s very, very powerful.” “They don’t want to be sick, but in an attempt to solve the problem, they’ve taken on the sick role and they’ve crowded out everything else in their life.” “If you see somebody has a chronic illness… and if actual symptoms seem to only appear in certain contexts, let’s say, when it benefits them, it does make you wonder what is the role of the symptom.” “You can be deluded that you are sick. You can believe you’re sick when in fact you’re not sick.” To say these remarks are deeply problematic would be an understatement. They blatantly ignore the lengthy history of nearly every invisible illness being attributed to variations on the rhetoric “it’s all in your head”— until science proved otherwise. They are a painful reminder of the ever-present distrust surrounding invisible illness, in a world of able-bodied people. History is simply repeating itself but with a new crop of illnesses. You can now watch an entire series of chronically ill people at the mercy of others “believing them.” Why Being Believed Matters On the surface, one could argue, who cares if others believe you? With regards to chronic illness, the stakes are too high and we have to care. Being believed could mean the difference between having a roof over your head, versus being homeless. Not being believed could give rise to, or escalate, emotional abuse in relationships. Spousal abandonment is a real thing and is far more common when the spouse affected is a woman (ME affects four times as many women as men). It’s also the difference between obtaining equitable healthcare and research funding, or neither. Not being believed has perpetually stalled growth in both facets for ME over decades. When we consider the psychological toll of not being believed, its impact on suicide risk is huge. We know the incidence of suicide is higher in patients with ME than that of the general population. A recent exploratory study showed that suicidal ideation in ME patients is the consequence of having a chronic, misunderstood illness. It is to no surprise then why there were warnings throughout social media to not watch “Afflicted” if you are in a vulnerable place. Other side effects of the series have included people’s chronic illnesses being attacked on Reddit and Twitter. There were even polls created to judge whether you believe individual participants in the film are actually sick. The film has added more fuel to the fires of disbelief so many of us are already up against every day. Fortunately, there were moments of belief and incredible support shown in “Afflicted.” The unconditional love and devotion Jamison’s mother had for him brought me to tears. Bekah’s brother and her boyfriend Jesse showed a level of dedication to improving her quality of life that did too. (On a side note, I would live for a spin-off of Bekah and Jesse making music and art together, in their mold-free van, in the desert). How these individuals showed up and faced adversity head on with their loved ones, translated to, “This is our battle, and we fight together.” In direct contrast, were the scenes that had me cringing. Jake’s father was afraid he wasn’t pushing his son hard enough – a son who is severely debilitated from chronic Lyme disease. A thought crossed his mind to throw his son into their cold pool in order to “wake him up.” Another highly triggering scene was when an emotionally detached father spoke cruelly to his son Jeff regarding his wife Pilar’s illness: “I have no empathy for what you are going through at all, and I don’t have pity for your wife.” Later we hear from Jeff’s friend who says to him, “Dude, I would have left that woman a long time ago.” These scenes made me feel the familiar pang in my heart of not being believed. Those who needed compassion desperately were shown none, despite their unbearably difficult circumstances. Why Science in ME Representation Matters Jamison revealed on Twitter that he was kept in the dark regarding the film’s intent, and sold on the idea that “Afflicted” was for our community. He expressed “feeling disappointed and misled.” As a result, he would not participate again if there was to be a second series. There was even a woman who stated on Twitter that she had been approached and interviewed for the series. At the time she had been disappointed she wasn’t chosen. After watching the series, she’s breathed a sigh of relief. At a certain point you have to ask: how could a series fail to represent a community this badly? The answer is the glaring absence of science. Jamison revealed on Twitter the “Afflicted” team did in fact interview leading scientists like Stanford geneticist Ron Davis, and every doctor at the ME symposium. ME scientists had been filmed, but all this footage was cut entirely from the docuseries. Instead the film maintained its focus on Dr. Friedman, whose credentials to speak on ME are never explained. Not only are none of the participants his actual patients, he also has never met one of them. This doesn’t prevent him from reiterating the psychological origins of disease, however. Incorrect facts also come up in “Afflicted” such as, “the vast majority of patients with chronic fatigue don’t have brain inflammation.” Jennifer Brea was quick to correct this on Twitter, by citing a research paper where brain inflammation was found in 100 percent of the ME/CFS patients studied. The fact is, there is tons of scientific literature available on PubMed showing abnormalities in nearly every system of the body in ME. They chose to not include them either, which forces me to draw to the conclusion that science was inconvenient for their predetermined narrative. “Afflicted” missed an opportunity and did a disservice not only to the ME community, but to the chronic illness community as a whole. It is obvious no one on their team lives with a marginalized illness, because the harm the docuseries poses would have been flagged. Truthful representation matters, both in films and in the making of them. This is especially critical when you are showcasing the voices of a marginalized population you do not belong to, or are affiliated with. What does truthful representation look like? It would be listening to what ME patients are facing each and every day. It would be learning the historical significance of our marginalization, the neglect in research funding and ostracizing by our medical systems. It would be understanding the specific obstacles millions of us experience. It’s asking how and what you can do to help. When you pose as an ally to get very intimate access to peoples lives, they’re exchanging their vulnerability for their truth to be told. Gaslighting their experiences for your own agenda undermines their very voices and lives. It is a violation of trust and ethics. It is an exploitation of people’s suffering because the film did not give back to the communities it took from. Such actions raise questions on moral integrity, as the film only contributes to further stigma, shame, trauma and suicide risk in the ME community. What can you do? These are the calls to action #MEAction put forward on their Facebook page: “We have collected some ideas seen in the community and added some options we feel might be helpful. 1. Instead of sharing Afflicted, share the voice of people with ME and/or other illnesses portrayed in #Afflicted. – Share Jamison’s own words in this New York Times article.– Recommend viewing Unrest which can be seen on Netflix as well as many other streaming platforms.– Read Julie Rehmeyer’s book.– Watch Forgotten Plague.– Share any other medium that has moved you that features the person’s own voice. 2. Make your opinion clear on IMDB and other review formats. 3. Write to Netflix. 4. Use caution when sharing Afflicted which might inadvertently lead to increased views.” 5. There’s also a petition going around that you can check out here. If you have any other other calls to action, be sure to share in the comments below.

How Netflix's 'Afflicted' Harms the ME/CFS Community

As a person living with ME (myalgic encephalomyelitis) for over a decade now, I eagerly awaited the release of the Netflix docuseries “Afflicted.” A beloved member of the ME community named Jamison Hill would be featured throughout it. Everyone believed it would be another platform used to contribute to the change we’ve all been striving for. I watched the entire series from start to finish. It follows the lives of Bekah, Carmen, Jamison, Jake, Star, Jill and Pilar, who, according to the IMDb description, live with “bizarre” chronic illnesses. The episodes were filmed in a reality TV style, with each person searching for answers and pursuing various treatments. I related strongly to the emotional oscillations between loss, grief, isolation, desperation and uncertainty portrayed in many of their stories. This connection I felt was unfortunately overshadowed by the very palpable undercurrent of skepticism throughout the entire series. It was clear “Afflicted” was made about the chronically ill, but it was not made for us. In a nutshell their thesis was: Can we really believe these people? The mind is capable of anything, look at how sick these people are because of it! While “Afflicted” introduced ME to a greater audience, it did so deliberately for viewers to question the validity of it, for entertainment purposes. It held people’s suffering up for debate and scrutiny without any context or education. This brought our community exposure, but in the worst possible way. Here are just few quotes taken from the series: “I had a few patients who identified so much with their illness that they really weren’t willing to be cured.” “What your reality in your mind is your reality in our physical world. The mind is where it starts. It’s very, very powerful.” “They don’t want to be sick, but in an attempt to solve the problem, they’ve taken on the sick role and they’ve crowded out everything else in their life.” “If you see somebody has a chronic illness… and if actual symptoms seem to only appear in certain contexts, let’s say, when it benefits them, it does make you wonder what is the role of the symptom.” “You can be deluded that you are sick. You can believe you’re sick when in fact you’re not sick.” To say these remarks are deeply problematic would be an understatement. They blatantly ignore the lengthy history of nearly every invisible illness being attributed to variations on the rhetoric “it’s all in your head”— until science proved otherwise. They are a painful reminder of the ever-present distrust surrounding invisible illness, in a world of able-bodied people. History is simply repeating itself but with a new crop of illnesses. You can now watch an entire series of chronically ill people at the mercy of others “believing them.” Why Being Believed Matters On the surface, one could argue, who cares if others believe you? With regards to chronic illness, the stakes are too high and we have to care. Being believed could mean the difference between having a roof over your head, versus being homeless. Not being believed could give rise to, or escalate, emotional abuse in relationships. Spousal abandonment is a real thing and is far more common when the spouse affected is a woman (ME affects four times as many women as men). It’s also the difference between obtaining equitable healthcare and research funding, or neither. Not being believed has perpetually stalled growth in both facets for ME over decades. When we consider the psychological toll of not being believed, its impact on suicide risk is huge. We know the incidence of suicide is higher in patients with ME than that of the general population. A recent exploratory study showed that suicidal ideation in ME patients is the consequence of having a chronic, misunderstood illness. It is to no surprise then why there were warnings throughout social media to not watch “Afflicted” if you are in a vulnerable place. Other side effects of the series have included people’s chronic illnesses being attacked on Reddit and Twitter. There were even polls created to judge whether you believe individual participants in the film are actually sick. The film has added more fuel to the fires of disbelief so many of us are already up against every day. Fortunately, there were moments of belief and incredible support shown in “Afflicted.” The unconditional love and devotion Jamison’s mother had for him brought me to tears. Bekah’s brother and her boyfriend Jesse showed a level of dedication to improving her quality of life that did too. (On a side note, I would live for a spin-off of Bekah and Jesse making music and art together, in their mold-free van, in the desert). How these individuals showed up and faced adversity head on with their loved ones, translated to, “This is our battle, and we fight together.” In direct contrast, were the scenes that had me cringing. Jake’s father was afraid he wasn’t pushing his son hard enough – a son who is severely debilitated from chronic Lyme disease. A thought crossed his mind to throw his son into their cold pool in order to “wake him up.” Another highly triggering scene was when an emotionally detached father spoke cruelly to his son Jeff regarding his wife Pilar’s illness: “I have no empathy for what you are going through at all, and I don’t have pity for your wife.” Later we hear from Jeff’s friend who says to him, “Dude, I would have left that woman a long time ago.” These scenes made me feel the familiar pang in my heart of not being believed. Those who needed compassion desperately were shown none, despite their unbearably difficult circumstances. Why Science in ME Representation Matters Jamison revealed on Twitter that he was kept in the dark regarding the film’s intent, and sold on the idea that “Afflicted” was for our community. He expressed “feeling disappointed and misled.” As a result, he would not participate again if there was to be a second series. There was even a woman who stated on Twitter that she had been approached and interviewed for the series. At the time she had been disappointed she wasn’t chosen. After watching the series, she’s breathed a sigh of relief. At a certain point you have to ask: how could a series fail to represent a community this badly? The answer is the glaring absence of science. Jamison revealed on Twitter the “Afflicted” team did in fact interview leading scientists like Stanford geneticist Ron Davis, and every doctor at the ME symposium. ME scientists had been filmed, but all this footage was cut entirely from the docuseries. Instead the film maintained its focus on Dr. Friedman, whose credentials to speak on ME are never explained. Not only are none of the participants his actual patients, he also has never met one of them. This doesn’t prevent him from reiterating the psychological origins of disease, however. Incorrect facts also come up in “Afflicted” such as, “the vast majority of patients with chronic fatigue don’t have brain inflammation.” Jennifer Brea was quick to correct this on Twitter, by citing a research paper where brain inflammation was found in 100 percent of the ME/CFS patients studied. The fact is, there is tons of scientific literature available on PubMed showing abnormalities in nearly every system of the body in ME. They chose to not include them either, which forces me to draw to the conclusion that science was inconvenient for their predetermined narrative. “Afflicted” missed an opportunity and did a disservice not only to the ME community, but to the chronic illness community as a whole. It is obvious no one on their team lives with a marginalized illness, because the harm the docuseries poses would have been flagged. Truthful representation matters, both in films and in the making of them. This is especially critical when you are showcasing the voices of a marginalized population you do not belong to, or are affiliated with. What does truthful representation look like? It would be listening to what ME patients are facing each and every day. It would be learning the historical significance of our marginalization, the neglect in research funding and ostracizing by our medical systems. It would be understanding the specific obstacles millions of us experience. It’s asking how and what you can do to help. When you pose as an ally to get very intimate access to peoples lives, they’re exchanging their vulnerability for their truth to be told. Gaslighting their experiences for your own agenda undermines their very voices and lives. It is a violation of trust and ethics. It is an exploitation of people’s suffering because the film did not give back to the communities it took from. Such actions raise questions on moral integrity, as the film only contributes to further stigma, shame, trauma and suicide risk in the ME community. What can you do? These are the calls to action #MEAction put forward on their Facebook page: “We have collected some ideas seen in the community and added some options we feel might be helpful. 1. Instead of sharing Afflicted, share the voice of people with ME and/or other illnesses portrayed in #Afflicted. – Share Jamison’s own words in this New York Times article.– Recommend viewing Unrest which can be seen on Netflix as well as many other streaming platforms.– Read Julie Rehmeyer’s book.– Watch Forgotten Plague.– Share any other medium that has moved you that features the person’s own voice. 2. Make your opinion clear on IMDB and other review formats. 3. Write to Netflix. 4. Use caution when sharing Afflicted which might inadvertently lead to increased views.” 5. There’s also a petition going around that you can check out here. If you have any other other calls to action, be sure to share in the comments below.

Why People With Chronic Illness Can't Always 'Listen to Their Bodies'

The wellness community is oversaturated with the catchphrase “listen to your body.” By tuning into feelings, emotions and physical sensations in the body, you cultivate the practice of mind-body awareness. For instance, if you perceive symptoms of tiredness, you honor your body’s needs with a nap as soon as you can. Listening to the body is integral to self-care, and fostering a mind-body connection is never a bad thing. Where this idea falls short is its applicability. It only works in certain circumstances, and for certain types of people with certain types of problems. It’s not so simple in the case of chronic illness, where needs are not discrete, but longstanding and pervasive. To put it simply, if we were to truly “listen to our bodies,” we may never leave our bedrooms. Being human, we also carry hearts, dreams and desires that need to be honored as well. This is why “listening to your body” is complicated in chronic illness, and can fall short in its understanding of our lives, especially in the following scenarios. 1. When you can’t listen to your body. When you live with chronic illness, there are so many instances when it’s not possible to “listen to your body.” The fallout of slowing down or stopping – financially and emotionally – are huge motivators to keep pushing. For many, pushing is a necessity, and mode of survival. An overwhelmed single mother who is barely able to stay afloat financially, doesn’t have the luxury of taking time off if her multiple sclerosis is bad. To do so could mean not making this month’s rent, or risking food security. In this way, “listening to your body” has become a mantra that is handed out indiscriminately, often accompanied by the sounds of a tranquil pan flute. It ignores how our society is not built to accommodate those living with chronic illness. In theory it is beautiful, but in practice, resting is a privilege that is not accessible to everyone. 2. When you are forced to listen to your body. “Listening to your body” is not a choice, but often the only option for many with chronic illness. Instead of feeling like a nurturing act of self-care (insert picture of woman in bubble bath, wearing a face mask, surrounded by candles), “listening to your body” becomes just another shape your survival takes on. For some it may look like selling your home to pay medical expenses, or for many others, going on disability (which isn’t a smooth or easy process). “Listening to your body” can be an emotionally painful and stressful experience to live through, and often a last resort. It’s moving through grief with enough grace to not drown in it. It’s redefining your life, beliefs and sense of purpose while facing many unknowns on the horizon. 3. When no one else listens to your body. On one hand, we’re given the message to “listen to your body.” On the other hand, those experiences are often invalidated by our medical systems. We’re deemed inaccurate witnesses to the very body we are listening and deeply connected to. This is especially true for woman, because of the gender bias that exists in the field of medicine. It is most evident in under-researched diseases that disproportionately affect women – like autoimmune disease, myalgic encephalomyelitis and many chronic pain conditions. This results in a “knowledge gap” – a term coined for the lack of information doctors have in recognizing and treating these conditions. All too often doctors dismiss our accounts as a result – a scenario called the “trust gap.” The “knowledge gap” and “trust gap” are what Maya Dusenbery, in her book “Doing Harm,” explains is at the heart of why woman are not being listened to. Having symptoms dismissed and psychologized as depression, anxiety or the all-time favorite, stress, happens all the time. The experience of listening to our bodies when no one else is can be traumatic and affect our health care in disproportionately negative ways. 4. When you are judged for listening to your body. Our society operates on the idea that with enough effort and determination, anyone can regulate the outcomes of their life. This belief is seductive because it provides a false sense of control, and works so long as things go as planned. In chronic illness, things don’t go as planned. You learn that even with rest, predictability and control are never a guarantee. The judgment that all health problems can be surmounted, if only, if only, you work even harder, still persists regardless. Popularized external messages that glorify pushing the body include “if things don’t go your way, work even harder until they do.” “Listening to your body”  is often an afterthought, as long as it doesn’t get in the way of achieving one’s #goals. Deaths from overworking denounce this paradigm completely however. In China alone, half a million people die from overwork each year. In Japan, the word karosi translates to “death from overwork,” and was declared a risk for one-fifth of the country’s workforce. Despite these dangers of overworking, the chronic illness community continues to face an onslaught of shame, blame and judgment when we do listen to our bodies and stop. Resting becomes an act of resistance, as we learn to thrive amidst the external and internal messages that associate self-worth with productivity. 5. When you choose not to listen to your body. “Listen to your heart” and “follow your dreams” are cliches, but are also integral to one’s wellbeing. What you love to do makes life meaningful, and brings a sense of fulfillment and purpose. Being sick directly impacts your ability to participate in life the way you wish you could. There is often a balance you have to strike between “listening to your body” and “listening to your heart.” To always rest and turn down opportunities will leave you feeling isolated and affect your mental health. To constantly be pushing to do the things you love will result in your health deteriorating. It’s a fine balance that anyone with a chronic illness knows only too well: the bargain of choosing things that bring you joy, at the expense of your health. It is never an easy choice, but is a necessary one. “Symphony of Symptoms” by Christina Baltais These are the ways that complicate my relationship to the phrase “listen to your body.” When you take it in the context of our world, while navigating through it with a chronically ill body, it is not as simple as it sounds. Nevertheless, I feel tired, and will go honor that as best I can.