This page is a companion to my series on How I Got Out of Rolling PEM. I believe that sharing what helped me comes with a responsibility to be honest about why it was possible for me—and why it isn’t possible for everyone.
Why I Wrote This Page
Throughout my rolling PEM series, I share strategies that helped me stabilize: aggressive rest therapy, heart rate monitoring, delegating tasks, managing comorbidities, and more. I’m proud of that content, and I hope it helps people.
But every time I write “here’s what worked for me,” I’m aware of a harder truth: many of these strategies require conditions that millions of people with ME/CFS simply don’t have. Pacing isn’t just a skill you learn—it’s something your circumstances have to allow. And for too many people, they don’t.
I wrote this page because I don’t want my recovery story to accidentally become another source of pressure, comparison, or shame. If what I describe feels out of reach, that is not a reflection of your effort, your character, or your worthiness of healing. It’s a reflection of systems that are failing you.
The Privileges That Made My Pacing Possible
I want to name these clearly, not as a disclaimer to check off, but as an honest accounting of what made the difference.
A supportive, understanding partner. My partner believed me from the beginning. He didn’t question my symptoms, minimize my pain, or pressure me to push through. When I needed help filling out disability paperwork, he sat with me and read one question at a time. When I couldn’t walk to the bathroom, he pushed my transport chair. When I needed total silence and darkness for days on end, he made it happen without guilt or resentment. This kind of partnership is not something I earned through good behavior or positive thinking—it’s something I’m profoundly lucky to have. Not everyone with ME/CFS has someone who will hold space for them like that, and many people’s closest relationships become sources of additional stress, disbelief, or harm.
Financial stability. I don’t face the pressure of choosing between resting and earning money to survive. I know that for many people with ME/CFS, there is no “energy envelope”—there is only what the bills require, regardless of what the body can give. The ability to stop working, to not chase freelance gigs from bed, to not ration medications because of cost—this is a privilege that shapes everything else.
An accessible, quiet home. I live in a space that supports my needs: low stimulation, temperature control, minimal noise, room to lie flat for most of the day. My environment doesn’t fight me. For people living in noisy apartments, shared housing, shelters, or homes with stairs they can’t navigate, the physical environment itself becomes a barrier to rest and recovery.
Access to knowledgeable medical care. I have an ME/CFS specialist, an electrophysiologist and autonomic neurologist who understand Hyper POTS, and providers who take my symptoms seriously. I know how rare this is. Many people with ME/CFS are still fighting to get a diagnosis at all, let alone coordinated care from clinicians who understand the disease.
Access to tools and technology. Heart rate monitors, HRV apps, the Oura Ring, a Polar H10 chest strap—these tools were instrumental in my pacing. But they cost money, and they require cognitive energy to learn and use. Not everyone has access to them, and pacing shouldn’t depend on owning the right gadgets.
The Barriers That Make Pacing Difficult or Impossible
I want to name these not because I have solutions—I wish I did—but because they deserve to be said out loud, and because the ME/CFS community cannot move forward if we pretend the playing field is level.
Disbelief and dismissal. Many people with ME/CFS are told they’re not really sick—by doctors, by family, by employers, by disability systems. When the people around you don’t believe your illness is real, pacing becomes an act of defiance rather than a supported strategy. You can’t delegate tasks to someone who thinks you’re exaggerating. You can’t set boundaries with someone who doesn’t respect your limits.
Financial precarity. ME/CFS devastates earning capacity, but disability systems are slow, adversarial, and often inaccessible. Many people are forced to work through crashes because the alternative is losing housing, insurance, or the ability to eat. The cognitive and physical demands of navigating SSDI, appealing denials, or managing Medicaid paperwork can themselves trigger PEM. The system designed to help is often the thing making people sicker.
Caregiving responsibilities. Some people with ME/CFS are also parents, or caregivers for aging family members, or the only adult in the household. You cannot practice aggressive rest therapy when a child needs to be fed, or a parent needs to be driven to dialysis. The gendered dimension of this is real—women with ME/CFS are disproportionately likely to carry caregiving burdens even while severely ill.
Inaccessible environments. Stairs. Bright fluorescent lights. Crowded waiting rooms. Noisy neighborhoods. Homes without climate control. The physical world is not designed for people with ME/CFS, and navigating it costs energy that could otherwise go toward healing. Accessibility isn’t a luxury—it’s a prerequisite for pacing, and most people don’t have it.
Isolation and lack of community. ME/CFS is isolating by nature—sensory overload limits social contact, crashes limit mobility, and the illness itself is widely misunderstood. Many people don’t have access to support groups, online communities, or even a single person who understands what they’re going through. When I talk about the emotional benefits of asking for help, I’m talking about something that requires having people to ask. Not everyone does.
Racial and socioeconomic disparities in healthcare. Research consistently shows that chronic illness is harder to get diagnosed and treated when you are Black, Indigenous, or a person of color. ME/CFS is already under-researched and under-recognized—and these gaps widen along racial and economic lines. People in marginalized communities are more likely to be dismissed, undertreated, or denied access to specialists who understand the disease.
What I Believe
I believe that sharing lived experience is valuable, even when it’s imperfect. My story is not universal, and it shouldn’t be treated as a template. But I also believe that silence helps no one—and that naming both what helped me and what made it possible is more honest than pretending I got better through willpower alone.
I believe that the ME/CFS community deserves systemic change: better research funding, faster and more humane disability processes, affordable and accessible healthcare, and a world that takes this disease seriously. Until those changes happen, many people will continue to suffer not because they didn’t try hard enough, but because the systems around them failed.
I believe that your worth is not determined by your ability to pace, to recover, or to improve. If you are surviving ME/CFS, you are already doing something extraordinary. Full stop.
And I believe that our stories—all of them, not just the ones with upward trajectories—matter. If you’re someone who can’t pace, who can’t rest, who can’t access the tools or the support or the care you need: I see you. I’m writing this in solidarity with you. And I will keep pushing for a future where the strategies I describe aren’t privileges—they’re rights.
Your Mileage May Vary (YMMV)
ME/CFS is not one-size-fits-all. Symptoms vary, root causes are still debated, and what helps one person might harm another. The strategies I share across my blog are based on my personal experience and my body’s specific response to specific interventions. They may not be helpful, accessible, or safe for everyone.
Please treat my content as one person’s story, not a prescription. I encourage you to work with a medical provider or ME-informed practitioner before making changes to your care plan. I offer my writing in the spirit of mutual aid and awareness, hoping it sparks curiosity or comfort—but never pressure or comparison.
Disclaimer
The content of this blog is based on my personal experience and self-directed research as someone living with ME/CFS. I am not a medical professional, and nothing on this site should be interpreted as medical advice, diagnosis, or treatment.
This blog is intended for informational and educational purposes only. Always consult with your doctor or a qualified healthcare provider before starting or stopping any treatments, supplements, or interventions related to ME/CFS or any other health condition.
I do not endorse or recommend specific products, services, or therapies. Use of the information provided here is at your own risk. I cannot be held liable for any outcomes that result from actions taken based on this content.
Thank you for reading this far. If this page resonated with you, I’d love to hear from you in the comments on any of my blog posts, or find me on Instagram @TickedOffCodess. Together, our stories shape the future. 💛