Treatment Burnout

“A couple years ago I was diagnosed with multiple chronic illnesses, so, for now, trying different treatments is kind of my full-time job.”

This has been my standard answer to the inevitable get-to-know-you “what do you do?” question at social gatherings since I graduated university. I’ve recently amended it to try to avoid deeply personal conversations about my condition, diet, and medications with friends of friends at parties, but the truth still stands: I have spent a huge portion of my time and energy for the past year and a half trying various treatments.

I have been viewing treatment and the pursuit of symptom relief as my job. I have put in countless hours, I have been diligent and dutiful, I have invested sweat, tears, and money, but if “getting better” was my actual job description, I’d have been fired ages ago. The level of exhaustion that comes with working this hard on something so wholly out of my control is something I never anticipated. It’s one of many aspects of being chronically sick that healthy people completely underestimate, not out of malice, but because they don’t have to think about it. The well-intentioned assumption is that when one thing doesn’t work I can just try something else and eventually I’ll find the “right” treatment. In practice this protocol is completely unsustainable.

Trying to treat a chronic condition is mentally exhausting. I make decisions about my treatment and health constantly. The potential considerations are often endless. What should I try and what should I put on the backburner? Who gets to have a say in my treatment choices? Doctors? Family? Friends? The internet? This one guy who wrote a book about how he’s cured it all with one simple, amazing treatment? How much will treatments cost my family? What are the risks or possible side-effects of any given treatment? What time of year is it (will allergies or flu/cold season make me more likely to flare)? How much energy do I have for complicated or physically demanding treatments? What will the recovery period be between attempted treatments? When is it time to stop trying one thing and move on to the next?

Between treatment experiments I usually experience a physical crash. A medication will make me sicker or cause my brain chemistry to go off balance, making me feel out of control with anxiety or depression. Or I’ll overdo it in physical therapy and land myself in bed for a week. Or I’ll schedule too many appointments in one week and promptly come down with the flu or a cold that takes weeks to recover from. It’s mentally and physically draining, but the emotional strain is even worse.

I am constantly managing and monitoring my emotions and expectations, beyond looking carefully for the emotional side effects of medications, I struggle to stay just hopeful enough to keep trying treatments without falling into utter despair when 9 out of 10 of them either do nothing or make me feel worse. I feel guilty when treatment options fail, always wondering if I should stick it out for another couple of weeks, just in case. I feel nervous before trying every new medication, wondering how many days or weeks I might lose to bad side-effects or worsened pain this time. I feel protective of my medical choices, but also worry constantly that I am being stubborn and choosing to stay sick if I’m not willing to try every single treatment or pseudo-scientific miracle cure suggested to me. I feel almost constant grief that I don’t know how to process or work through, so I find myself panicked to get out of the situation that’s causing it. And if I am being honest, I know that by using that grief to force myself to try treatment after treatment, I am stealing life from myself.

There is so much pressure as someone with a chronic illness to work towards “getting better.” Beyond societal definitions of worth and cultural fears of illness and death, I am acutely aware that even the most understanding loved ones “hate to see [me] like this.” I feel desperate to be able to give them a version of myself and my life that isn’t painful for them to witness, even though I don’t know if that version of me is possible. And after years of not improving “hate to see you like this” starts to sound like: “hate to see you.” Heartbreakingly, desperation, whether for myself or for the sake of the people I love, is neither sustainable nor effective. 

There are no easy answers here. However, I do know that by dedicating the vast majority of my energy to trying to feel well enough to have a (likely unattainable) normal life, I am depriving myself of life right now. I am so exhausted and grief-filled that I can barely write, I don’t have energy for hobbies or passions, I don’t have energy to make new friends, or date, or look for community, often I don’t have energy to leave my house if I’m not going to an appointment or buying groceries. I am investing so much in trying to achieve something that is out of my control that I don’t have anything left over to invest in the dreams that matter to me most. Many days I feel like I’ve completely forgotten how to have dreams or goals beyond “not feeling like this.” I am trying to embrace the complexity of emotions that comes with this. I am allowed to wish I wasn’t sick, I am allowed to be angry about being sick, but I am also allowed to accept that I am sick, and that physical health is not my purpose in life.

As this year ends, I am working to imagine a future for myself where I feel like full person without health as a prerequisite. This is challenging when I feel constantly bombarded with cultural messaging that declares that physical health is not only imperative to happiness and success, but also a marker of moral character, beauty, and worth. On some level it seems innocuous to encourage people to prioritize health, but when I buy into that narrative I lose so much of myself. I am learning that it doesn’t improve my life to prioritize my physical health over my emotional health, my sense of self, my passions, or my connection with other human beings. For now, letting go of the health obsession means designating periods of time where I am not trying anything new, and saving energy to invest in all of the things I am besides a sick person. This is a complicated task, being chronically ill effects every facet of my life, but it is detrimental to continue viewing myself as a project. I am learning to set aside space for just being a person. I am internalizing the belief that the person I am is far more valuable than my health, and the she can exist fully and unapologetically with or without illness.


[image description: a panoramic shot of a green meadow lined with autumn trees, Hailey is laying in the grass in the corner of the photo and looking up at the sky.]


Resources on Immigration Justice in the United States

Hello friends,

Continuing issues with my health have made my usual reflective writing challenging in this season, however I hope to return to blogging (albeit intermittently, as always) in the near future. For now, I would like to share with you this project that I have been working on over the past few months. It has been tempting for me to feel powerless to change the injustices I’ve witnessed over the past fews years, especially since becoming disabled, but I am trying to find ways to use the energy that I do have and the skills I gained in the process of earning my degree in history to do my party to educate myself and others on issues that are close to my heart. This resource guide on immigration justice is one attempt to do this in a way that I hope is useful to anyone seeking to understand both current politics around immigration and the history behind them.

As the current administration continues to implement practices to limit immigration and asylum seeking, particularly from the Northern Triangle of Central America, it is important that those of us concerned about human rights, safety, and freedom work to educate ourselves and those around us thoroughly on the legal, social, political, and historical forces impacting current events and policies. The purpose of this document is to provide introductory (and a few more advanced) resources on the immigration and asylum processes, immigration history, recent news, and issues of injustice arising in the US immigration system. I have done my best to select sources that I believe to be reliable and accurate, but I also believe it is important to critically read multiple sources as we strive to fully understand the facts and their context. Below I have copied the table of contents from this document to give you an idea of the topics it seeks to address. For the full document click here.

Table of Contents:

  • What is Asylum?
  • Why are People Leaving the Northern Triangle?
  • How Long Does it Take to Immigrate Legally?
  • What Rights do Immigrants Have in The U.S.?
  • Current/Recent Events and Policy News

Subcategory: Family Separation and Treatment of Detained Minors

Subcategory: Migrant Caravan from Honduras

  • History of U.S. Immigration
  • History of U.S. Intervention in Latin America
  • Immigrants’ Personal Stories
  • How to Get Involved
  • Immigration Justice Organizations to Follow

Subcategory: Organizations Local to the Bay Area


Full google document is again available here.



Body Talk

Content Warning: discussion of drastic weight loss, disordered eating, and body dysphoria.

Last week was eating disorder awareness week and several strong and courageous people I love shared bits of their eating disorder and recovery stories on their social media accounts. This prompted me to reflect my own journey with my body and health. To be honest, I don’t know if I’ve ever had an eating disorder. I’ve definitely had disordered thinking around food and my body, but it always stopped short of purging, restricting, fasting, or crash dieting. Still, my relationship with my body has been turbulent and complex, and I have a long ways to go towards accepting it as it is. Until now, I’ve more or less avoided writing about my relationship with my body because I worried I wasn’t qualified enough to be part of the conversation since my experience of disordered eating and body image hasn’t been as severe as other people’s. I am acutely aware that as someone who is white, cisgender, and not perceived as overweight, I have a lot of body privilege and am not treated poorly due to my weight or appearance. However, I recently realized that most people I know, especially women, have struggled to accept their bodies and resist the urge to give into disordered eating just like I have, despite never being diagnosed with an eating disorder. So, I’m sharing a bit about my journey with my body in hopes that it reminds others that they are not alone as they continue to resist the voices that tell us we are not good enough as we are.


A couple of months before my 15th birthday, I was on a class camping trip, getting undressed in the bathroom, when I realized that my body fat had all but completely disappeared. I’d been sick a couple times over the winter, but I didn’t think much about it until I got home and weighed myself. I’d lost 25 pounds without realizing it. This one of the first signs that something was off in my body. Over the next four months I struggled consistently with low energy, loss of strength, frequent fevers, constant nausea, and lack of appetite. One month that spring I slept at least 14 hours most days. My doctor thought it was mononucleosis, even though the tests came back negative, but we never really found out.

By March, my friends started making comments. We loved thrifting, but it became less fun when my best friend at the time constantly pointed out that we didn’t wear the same size anymore and called me “stick girl” and “miss skinny.” Other friends later told me they’d thought I was anorexic, but didn’t show any concern at the time. I got compliments from older relatives who asked if I was “watching my figure” while I was desperately trying to muster up an appetite. Almost none of my clothes fit: my jeans didn’t stay up, my t-shirts were baggy, I dropped two bra sizes. Despite the envy and positive remarks coming from others, I was more self-conscious than I’d ever been before. The bones in my back and chest stuck out, my ribs were visible, and every time I ate my stomach distended noticeably. My mom bought all my favorite fattening foods, bacon, whole milk, guacamole and so on, hoping that it would stick to my bones. I gained about ten pounds and it became harder to want to gain weight because even though I was thin I was still bigger than girls in magazine, and no one was really worried about me anymore. For the next couple years my weight fluctuated just above the underweight marker for my height, I got literally every virus I came in contact with, my appetite continued to be unpredictable and acutely affected by illness and stress. I continued to be self-conscious about my acne and lack of curves, but I recovered some of my strength, and grew to enjoy the changes to my body. What American teenage girl hasn’t been conditioned to believe that being able to eat whatever you want and never gain weight is a form of success?

My last drastic downward weight fluctuation happened when I was 19. I lost 8 pounds in two weeks after a break-up. I was used to these changes by then, and knew the drill for gaining back the weight. I wore lots of dresses and tights, partly because they accommodated the fluctuations better than jeans. My friends stopped commenting on my size, my parents stopped worrying, my energy levels seemed more normal, and I thought I’d reached a healthy equilibrium.


A couple weeks before I turned 22, my health took another downturn. Previously mild and inconsistent fatigue and muscle soreness became constant and debilitatingly severe. I spent over a month almost entirely in bed, trying to stay awake long enough to study. I dropped down to part-time enrollment at school, and was diagnosed with fibromyalgia and chronic fatigue. The muscle aches and nerve pain I experienced made it feel like my bones were sticking out all over. I felt like I must be losing weight again. But I didn’t. In fact, since being diagnosed I’ve returned to my pre-illness weight for the first time since I was 14.

The summer after my diagnosis my pain symptoms were decently managed by medication and so I tried to establish a regular exercise routine, despite my fatigue. This was partly because consistent exercise is believed to help mitigate some of the symptoms of my chronic illnesses, but I was also anxious that if I didn’t pay extra attention to my eating and exercise, I would continue to gain weight. I was afraid that if I was both sick and visibly out of shape people wouldn’t have compassion for my situation, would decide I wasn’t worth knowing or loving, or would be disgusted by me. Furthermore, my lack of health caused me to hyperfixate on the aspects of health that felt in my control. I become obsessed with making sure I ate enough fruits and vegetables every day, I feared junk food, and while I didn’t cut out sugar entirely (because it is one of my small joys in life), I felt guilty everytime I ate it, believing that I was inflicting further suffering on myself because I wasn’t strong enough to eat “perfectly.” When my pain symptoms would flare-up I’d berate myself and search my memory for ways I’d messed up by eating the wrong food. I wanted so badly to be in control of the problem. If I missed a meal or let myself go to sleep a little hungry I’d tell myself that I could stand to lose a couple pounds anyway and feel slightly satisfied knowing I wasn’t eating enough to gain weight. Obviously, eating plenty of fruits and vegetables, avoiding foods that don’t make your body feel good, and not eating when you’re not hungry are not unhealthy habits in and of themselves, but my thinking around those habits has not always been healthy. Despite outwardly making healthy food choices, my internal narratives around my body and eating have probably bordered on orthorexia (obsession with eating only “healthy” foods) for the past couple of years. 


I am still struggling to accept my body, but over the past six months I’ve become more aware and intentional about working towards body acceptance. I am learning that I still see my body very differently from other people. I am surprised every time a doctor refers to me as thin or small, because I’ve been so much smaller that this version of my body sometimes feels huge. I still have to resist feeling guilty for treating myself to small amounts of unhealthy food, even when they bring me joy. I still have to remind myself that I have to eat consistently in order to have energy and to avoid pain flare-ups, and that I sleep better if I feel full. I’m trying to re-train my brain to stop fearing weight gain and changes in my body, because I know it will change many more times in the course of my life. I’m trying to learn about the mental health aspect of some of my disordered thinking about my body. Eating disorders, anxiety, and other control-related mental health issues run in my extended family and I have realized that my relationship with my body is tied to my experience of anxiety, and therefore it does not always reflect reality. I am trying to trust my body more and listen to it better. I’ve consistently been the same weight for over two years now, it doesn’t change with exercise and my body bounces back quickly when I lose weight from viruses, so I’m learning to respect that this is the natural size and shape my body wants to be in this stage of my life.

Finally, I am trying to challenge the dominant narrative around body image, dieting, weight loss, and beauty standards when I come across it. Usually this is just an internal process, but when I can recognize that our culture’s obsession with weight loss, fat-shaming, and dieting are not normal or healthy, I can better embrace the parts of myself and other people that don’t fit into the prescribed ideals. One external way I’ve attempted this is by curating my social media so that I’m following people with diverse bodies (including other people with chronic illnesses and disabilities) who don’t promote diets or weight loss regimes and who embrace their bodies and their inherent self worth. This movement for body positivity rejects the idea that our ability to conform to the current standards of beauty is the primary indicator of our health, happiness, and value, and it encourages people not only to embrace their bodies as they are, but also to be cognizant that we are so much more than just our physical appearance. These activists motivate me to love my body regardless of its limitations and its deviations from the ideal body type, their content helps me to internalize a different view of what “normal” bodies look like, and their dedication to body positivity gives me hope that our culture of dieting and dysphoria can change, giving way to a greater capacity for self love and compassion.

IMG_4747 (2)

Body positive social media accounts to follow:
Megan Jayne Crabbe–@bodyposipanda (instagram, twitter),
Michelle Elman–@scarednotscarred and @bodypositivememes (instagram, twitter),
Annie Segarra–@annieelainey (instagram, twitter) 
(And there are many more great accounts out there if you do a bit of exploring!)

Resources if you or a loved one are struggling with behaviors that could be linked to an eating disorder: 
NEDA’s helpline:
Eating Disorder Hope (EDH):



Breaking Free From the Productivity Myth

“I am sooo tired today.” I say to my friend at lunch. “I really needed eight hours of sleep last night and I only got six because I was up late doing the reading for class.”

“I only got four, I’m like, dead. I had so much homework to do! I’m taking 18 units this semester so that I can graduate on time.”

“Wow, that’s a lot! When do you sleep?”

She laughs and takes a gulp of her coffee, “I’ll sleep after college… or when I’m dead.”

Conversations like this were so commonplace in my college years that perpetual overtiredness, burnout, and emotional instability seemed like facts of life (to the point that I didn’t get diagnosed with a fatigue disorder until my fourth year of school). After school, many of my friends and acquaintances still live life at a pace that renders them exhausted and stressed almost constantly, except now it’s called “hustling” and apparently it’s what you need to do in your 20s in order to have a successful life. But does life actually slow down after that? Is feeling perpetually stressed and worn out inherent to adulthood, or is there something else going on?

American capitalist culture prioritizes productivity, and not simply productivity that is personally satisfying and meaningful, but productivity that “proves” our success to the rest of the world while supporting and feeding a system powered by a frantic belief in scarcity and an overwhelming imbalance of resources. The pressure of this system and its values causes stress, poverty, and violence in the lives of many by depriving people of resources, but also by undervaluing essential aspects of life and humanity because they are not lucrative. Community, emotional support, personal growth, and time set aside for peace and reflection are all essential to spiritual, mental, and emotional health. And while we’re expected to find happiness and success, the cultural messages we receive every day undervalue the work and rest it takes to cultivate personal and communal health and thriving. This is largely due to the fact that this productivity culture hates, fears, and shames limits, despite the fact that being human is an inherently limited experience. We are often encouraged to push our minds, bodies, and boundaries past their limits in order to achieve more, even to our physical and mental detriment.

I have recently come to terms with the fact that due to my chronic illness, I cannot work for the foreseeable future. This is a frustrating situation to be in within the context of a culture that equates independence with maturity, productivity with value, and shames humans for engaging in natural interdependence. The admission of my limitations and inability to join the workforce is often met with awkward pity or misdirected envy. Well-meaning friends and strangers either can’t imagine how awful it must be to be incapable of living a “normal” life, or they fantasize about a life free from the prescripts of rugged individualism and cannot imagine a way out for themselves. I’m not going to pretend that I’m at peace with being chronically ill, or even that I’ve totally accepted it as my reality. But I am trying to view aspects of my limitations as an invitation into a life that is more whole. I realize that despite illness to the point of disability, I am in a very privileged position to be able to accept this invitation. As I embrace and cultivate a culture of interdependence and balance for myself I benefit from a financially stable family who are able and willing to keep a roof over my head, ensure that I’m fed, and help me pay for health care and medical expenses. Some people in my position don’t have the security and privilege I have to explore alternative ways of living within their limitations. Many disabled and chronically ill people have no choice to work even when it causes them excruciating pain and exhaustion, or makes them sick, or significantly reduces their quality of life. I’m sharing the invitation I feel called to accept not for the purpose of telling other sick people how to live their lives, but to argue that all of us, regardless of ability, health, class, etc. have the collective power to change these cultural narratives that ultimately do us far more harm than good.



In the past two years, I have had to slow the pace of my life significantly. At times, this  makes me feel like I’m missing out on life, or being left behind. But just as often I notice new space for things I didn’t know I needed. My emotions are more stable than when I was constantly overworking my mind and body. I enjoy time with my family more than I have since I was a kid. There is space in my life for creativity. I have more time for reflection and emotional processing. My life isn’t stress-free, and I strongly believe that some stress and negative emotions are natural and healthy parts of being human. However, I have learned that the amount and degree of stress I’d taken on previously was unnecessary and encouraged by a culture that upholds chronic stress and busyness as some perverse badge of honor.

Additionally, my limited energy necessitates that I prioritize how I spend my time, mental and physical capacity, and emotional stamina. I like to think I’ve always been a fairly intentional person due to my upbringing, but dealing with chronic fatigue has demanded that I think even more carefully about what is most important to me in life, and guess what, there’s a clear winner: relationships. Journeying with and supporting others has been the single consistent calling of my life. Leaning into this role has never been lucrative, nor have I necessarily wanted it to become lucrative, but it is crucial to my sense of purpose. After basic health and hygiene, relationships are the first thing I want to give my energy to. Deconstructing my relationship with productivity has allowed me to embrace the priorities and gifts in my life that aren’t lucrative in a new way. When I embrace relationships and offering support to the people in my life as an inherent part of who I am that deserves energy and has value (despite not producing anything), I am more present to the people in my life, less resentful of the energy interpersonal dynamics take, and I feel better about my role in the world.

I realize that most people reading this are employed, and I am not arguing that working is a problem. However, in a culture that assigns worth and value based solely on work and productivity, we all miss out on essential and life-giving aspects of living that no one will pay us for. I am convinced that for all of us greater health lies on the other side of slowing down and valuing our unmarketable gifts and passions enough to let them thrive. I know this is a complicated issue to which I am presenting one highly simplified perspective, and that there is tons of important organizing, thinking, and writing done about deconstructing capitalism. I agree with many others that this system, in which people spent the vast majority of their existence selling their lives and labor in order to survive, ought to be dismantled. But without a substantial cultural shift towards valuing our rest, our relationships, our passions, our health, and our humanity, we will not have the momentum to create lasting change.

Since I began writing this reflection I was offered an exciting, one-time opportunity. However, this opportunity would have required me to abandon (for a week) the commitments I’ve made to myself and my goals this season. It would have been a cool experience, but it would have taken a great deal of energy and it wasn’t aligned with my larger goals, so after some deliberation I turned it down. Limitations force us to make choices and sometimes that feels unfair and frustrating, but ultimately choices are what give our lives meaning. Right now I am choosing to honor my limitations, focus my energy on the things that are most valuable to me, and to embrace interdependence, balance, and rest as crucial aspects of life.


Winter Weary

For many of us, winter brings a desire to slow down, reflect, and heal in the comfort of warm, peaceful settings protected from the elements and the hustle and bustle of the holidays. But winter also brings low moods in response to decreased daylight, the stress some of us feel around holidays and family, and a myriad of seasonal viruses. I went into November eager to experience winter without the impending doom of college finals for the first time in five years. Unfortunately, reality could not match my dreams of cozy hours spent reading as the rain pounded on my window, or of bright and cheery adventures amongst the lights of downtown, or gliding around an ice skating rink with friends.

Instead, my immuno-compromised body fell victim to at least four viruses, the low daylight sent my mood plummeting, and the rain and cold triggered my fibromyalgia and chronic fatigue so that I experienced even greater pain and fatigue than usual. The good days were few and far between, and many days I didn’t even have energy to read, let alone plan and embark on wintery adventures. Although it’s been almost two years since my initial diagnosis, seasons like this are still hugely discouraging. The double-winter of my physical and mental health is inescapable. Holiday parties mean small-talk with strangers and relatives that reawaken my fears that my life is going nowhere and that I will always be trapped in this moment in time by my illness. January brings with it the expectation of newness, inspiration, and determination to accomplish important and fulfilling things, and I feel caught in the middle of my desire to grow and my physical inability to do many of the things I long to experience. Changes in the lives of people around me–new jobs, graduations, engagements, births, etc.–make me feel like I will be left behind as everyone else moves forward and I just keep surviving.  

Amidst the heightened grief, anxiety, and isolation of this season of life, I am trying to let the slowness and hiddenness of winter teach me. I am trying to learn to invest in simple, sustained growth that no one will ever applaud or even see. I am trying to learn to allow myself to be passionate about achievable dreams and to work on them steadily, even if I must work at what is sometimes a gruelingly slow pace. I am trying to learn to be compassionate towards myself when I cannot see where movement or change is happening within me. I am trying to learn that sometimes breathing and being is enough. And I am trying to learn to trust that I can still find a purpose that gives my life meaning and fits within the limitations my illness places on me. I can’t say for certain that the dark and cold of this winter will inevitably give way to the light and warmth of spring, there is too much I don’t know to make that prediction. Some days all I know is that I’m surviving, but I have to believe that in the dark and the cold hope is surviving with me.

September Feels Like

My ongoing journey with chronic illness has been particularly painful and difficult lately. It has become clear that I’m not able to work even a part time job at this point in time, I don’t not know when or if that will ever change, which is very upsetting. Besides short daily walks, I rarely make it out of the house, which is depressing and isolating.

I’m trying to find community and connection with others, but it’s difficult for me to speak authentically about how I’m feeling and the toll that illness is taking on my body, mind, and spirit, and I worry that my identity will be reduced to “the sick friend” in the eyes of others. I am learning that while I exceed at self-expression, actual emotional vulnerability is something I haven’t figured out how to bring into many of my friendships. I often feel a need to offer some hopeful resolution about what I’m going through because it’s painful for myself and others to admit that there isn’t one, and that what none of this make sense right now. The way other people’s faces fall when I tell them I’ve been in pain and exhausted for days on end, reflects back a small portion of my own disappointment and grief that is still overwhelming to face. However, my desire to protect other people from that grief is preventing me from being vulnerable in my relationships.

Sometimes, when I feel that words aren’t enough to express myself, or when I realize that I’m tempted to use words as a wall rather than a bridge, I find that communicating visually and creatively allows me to show rather than tell, leaving in all the uncertainties and things I haven’t defined yet.

So instead of muddling on and trying to make sense of the senselessness of this season, I’m taking a stab at showing you, without conclusions and resolutions, how September has felt.







September feels like uncertainty and immobility.
I don’t know where I’m going, or if I’m going anywhere.
I am not sure what is left of me when illness takes up so much of my life.
Sometimes I feel like I am disappearing.

How to Support Your Sick and Disabled Friends Beyond Prayers for Healing: An Open Letter to My Christian Friends.

 I’ve been diagnosed with fibromyalgia and chronic fatigue for almost a year and a half. I deal with widespread chronic pain, perpetual exhaustion, executive dysfunction, and a handful of other delightful symptoms. I have good days where I can function reasonably well and present as able-bodied and healthy, and I have bad days where I can’t get out of bed and my symptoms render me thoroughly disabled. Usually, I fall somewhere in the middle of these two extremes. My physical and mental functioning is limited, unpredictable, and impacted by stress, emotions, weather, and my immediate environment. It’s frustrating to deal with, but I am trying to embrace the slow process of learning to live more slowly, disregard American societal expectations of productivity and self sufficiency, and focus my energy on what really matters to me.

At least once or twice a week, a well-meaning friend or relative tells me that they are praying for my body to be healed of fibromyalgia and chronic fatigue. I fully appreciate that these assurances come from a very real desire to encourage, and to see a loved one relieved from pain and limitations. However, while I’m living with pain, fatigue, limitations, and grief, constantly being told that my loved ones are hoping for a miracle to befall me can feel like a lot of pressure, and even a denial of or a detachment from my reality. The truth is, I am very likely to deal with my illness in some way, shape, or form for the rest of my life. Some people with chronic illnesses are eventually able to find medications, diets, routines, exercise, or supplements that help them manage their symptoms, sometimes well enough that they can do the same things non-ill, able-bodied people can do most of the time. Some people with chronic illnesses find that they develop new conditions and disabilities as they age, or they have progressive illnesses that shift and gain or change symptoms as time goes on. Many of us fall somewhere in the middle of this spectrum, we learn to manage our symptoms, which can be a long process, and we will likely have to keep managing them throughout our lives. That said, it is rare for people to make complete recoveries, so knowing that people I love are praying that I will be one of those few doesn’t necessarily feel good for several reasons:

  1. I feel pressured to seem more healthy because you’ve put faith in my healing. I’m still working out what I believe about God and suffering in light of all of this, so I don’t always feel equipped to help you understand my lack of healing or to comfort you about the chronic nature of my illness.
  2. I feel isolated by your choice to focus on my hypothetical future healing instead of choosing to be present to my pain and my life as it is now. It can feel like people are waiting for me to get well so we can have fun again, or so they can feel satisfied that I’m doing well and they don’t have to worry about me.
  3. It feels like you’re in denial about the chronic part of my chronic illness. It’s a lot of ongoing emotional work for me to make peace with the fact that I will be managing symptoms for the rest of my life (even though I do have hope it will get better than it is now). I am still grieving the loss of the life I hoped I’d have, and I welcome support and company in that process, but it only makes it harder when other people are so focused on their desire to see me ‘fixed’ that they can’t come alongside me and love me in my grief.
  4. These prayers for healing are often accompanied by the assertion that once healed I will be able to live out my purpose. This makes me uncomfortable for two main reasons. First, because implies that my life will not have purpose and meaning while I am disabled, which just isn’t true. Second, it makes me feel like you believe I deserve healing more than any of the other millions of people with illnesses and disabilities on the planet. Most people don’t become miraculously healed, so why should I be the exception? I have a great deal of privilege in other areas of my life, I have a supportive family, I am reasonably financially stable for a recent college graduate, I have enough education that I don’t have to find work that demands painful physical labor, etc. Yes, it’s still really difficult being chronically ill. But if someone gets a miracle, it shouldn’t be me.  
  5. It upholds cultural standards of productivity and health as determinants of worth. While I am often frustrated by my chronic pain and fatigue, I do believe I can have a rich, fulfilling life while being disabled. So, it can feel like your wish for me to be healed denies the potential value of my future with my illness, like my life would be worth more if I was healthy, which is an incredibly harmful narrative that is unfortunately pervasive in American culture.

Of course, people who don’t pray or believe in miracles do other things that evoke similar emotions: like suggesting expensive (medically dubious) miracle cures, or assuming that treatments are one size fits all. However, I have found it especially challenging to communicate with my religious friends about how they can love me through this, while still respecting their earnest faith and desire for my well-being. Now that I’ve communicated about how prayers for healing don’t comfort or support me, here are some ways that anyone who wants to can love me and their other disabled/chronically ill friends, family, and neighbors:

  1. If praying is important to you, pray for me to have more good days than bad days this week, or pray for my community, family, and doctors to know how to support and care for me, whether or not I can be cured. I’d also suggest asking what I (or your neighbor/friend/family member) would like prayer for.
  2. Educate yourself a little about my illness/disability if you can, and do any emotional processing about it that you need to do with someone besides me. Having to teach and then comfort someone else about my illness is something that happens more often than you might expect. I don’t mind teaching people about my illness too much, but sometimes I don’t have the energy. It’s really hard for me to comfort someone else about my pain and fatigue. Please don’t make me do that. I know you want to show sympathy, but don’t make me reassure you that I’m okay, I’m dealing with a lot and it makes me feel like I can’t be honest with you about how I’m doing. (For more on this idea look up Circle of Grief/Ring Theory.)
  3. Take a little time to think about how you can come alongside me in my process and in my life as it is now. For many ill and disabled folks isolation and loneliness are huge frustrations, you can help with that by setting aside time for us, asking how we’re doing or if we want to process how we’re feeling, and do the work to sit with us wherever we’re at emotionally and physically without trying to fix us. Sometimes you can’t help, but you can always love.
  4. Remember that while my illness/disability impacts my whole life, I’m still a full person with inner and outer lives, who has valuable thoughts and ideas. Ask me what I’ve been thinking about, listening to, reading, etc. Sometimes your disabled friends’ outer lives are limited and we can’t work or get out much, so asking about our inner lives can be a good way to reassure us that that our lives are valuable, even when they aren’t materially productive.
  5. Think of us when you vote on issues that impact us. A major reason that life for people with illnesses and disabilities is so challenging is that American society largely isn’t inclusive or accessible to people who are not able-bodied. Advocating for inclusion and accessibility in our infrastructure, institutions, and cultural values is a huge way to support your disabled friends, family, and neighbors in living fulfilling lives with our disabilities (not in spite of them).
  6. Help us come up with fun ways to spend time with you within our limitations. Personally, I often worry that I’m not fun anymore, especially in particularly bad seasons of pain and fatigue. So I appreciate it anytime someone comes alongside me in the process of finding new ways to have fun together!
  7. Ask people what they need and how you can best support them. This list is obviously not exhaustive, everyone’s experiences of illness and disability are unique to them, so ask your loved ones how you can support them or what they need. It can be hard for me to ask people to do things for or with me that support me in my illness because I often worry about being a burden, but when people ask what I need and then offer support that meets those needs, I feel cared for and understood.

Dealing with grief and suffering, whether our own or someone else’s, isn’t something we’re very comfortable with in American culture. Many people have trouble connecting with others in grief, and don’t know what to say or do to offer support. So, well-meaning people fall back on generic platitudes, which aren’t necessarily wrong, but which can feel deeply isolating and simplistic when I’m living with the difficult reality of constant pain. Instead of relying only on hope, or prayer, or waiting-and-seeing to take care of your sick and disabled loved-ones, consider how you might couple your hopes and prayers for us with substantial action to make our lives a little better, easier, or brighter. Sometimes this action is as simple as being present and reminding your ill/disabled neighbors that the pain we deal with doesn’t detract from our personality, dignity, and value.

More writing I’ve done about illness, pain, and grief can be found here, here, and here.