How I structure work with (mild-moderate) Myalgic Encephalomyelitis
My experience with ME and how I've adapted to life.
July 16, 2026
5 minute read
1k words
A photo of my compression sleeves. They support my knees and help my balance when standing.
It's spring 2025. I just started working a sales job in the signage industry. It's my first experience in the corporate world, that I had migrated to after leaving my last 2 jobs due to physical capabilities. At the time, I had understood my muscle fatigue to come mostly from overworking myself physically, and came to accept that I'd have to take a nap after every work shift. My shift into office life was meant to alleviate that.
Instead, after a day's work, I'd develop brain fog bad enough that I struggled to form thoughts, the lights in my house gave me headaches, and the four hours after I got home became synonymous with lying in bed, blinds closed, leaving responsibilities for later.
Myalgic Encephalomyelitis (ME) is a chronic neuroimmune disease that affects ~5-9 million people in the U.S. alone. There isn't a known cause or cure, but it's often triggered by infection. It's a complex disease, but its hallmark symptom is Post-Exertional Malaise (PEM) — defined by the organization World M.E. Alliance as the worsening of symptoms after physical, mental, or emotional exertion that would not have caused a problem before the illness, typically worsening 12-48 hours after exertion. For me, PEM manifests as I described above — mostly in the form of brain fog and muscle fatigue lasting a few hours up to even multiple weeks.
Discovering I have ME was fast. Coming to terms with it has been a much slower journey, and it's far from over. When leaving that job to move to Maine, I knew I had to figure out how to keep the cycle from repeating.
The reality
The very first part of this journey, and honestly most importantly, I had to get out of my own way. For a long time, I was (and still am) stuck in a shame cycle, not knowing how (or even if) there's a way I can still do the things I love. The honest answer is: yes and no.
I still design. I still listen to music. And most crucially, I still learn. These past few months have been full of design passion projects, developing an app for the first time, and exploring new things in a lot of different places.
This isn't the truth for many people with ME. I'm lucky (and so grateful) that my case is more on the mild end. My focus in this moment isn't on recovery, it's about preventing things from getting worse.
How am I doing that?
On a personal level, I've done a lot of thinking around ways to make things I do often easier. A lot of accommodations I've made & routines I've established have been in places that people usually don't think twice about.
Compression sleeves to help support my knees and keep me balanced
Buying pre-cooked meat, pasta, and other ready ingredients for easy meals
Having different mobility aides for different needs
Having a few plans to help me get through grocery shopping
Exploring hobbies that I can do from bed or with low energy
But the biggest thing that's helped me so far are the mindset shifts. I've had to learn day by day to treat myself with grace and kindness. There are a few things I've adopted as mantras that help me get through the days:
Finding joy in the small things. I used to find my happiness from success in work or school. I took pride in working myself to the bone, working multiple jobs for no reason other than my own pride. Initially, not having either work or school forced me to think about what I actually cared about. It's also forced me to understand how I can discover joy anywhere and (temporarily, at least) forget my fear of missing out.
Treating myself the same as I'd treat a loved one. I have a tendency to offer my loved ones more kindness than I do myself. A big way I've been able to cope is by allowing space for the harder moments, and taking the time to understand what I need.
There's still reason to care. The moment I gave up my agency in favor of feeling doomed, I lost motivation to hope for a more fulfilling life. So while I'm sulking, I also try to remind myself that if I accept my limitations and do my best to live within them, I can live a fulfilling life.
How it's affected my work
The philosophies I use in my personal life carry over easily, as does the willingness to adapt my surroundings to work for me. To keep up with my freelance work at Tideworks Studio, I've adopted multiple methods based on systems.
Content is batched during high-energy moments. I always start writing in a templatized blog format, as it's the most natural for my brain to write in, strip down the core ideas, and repurpose the same piece for multiple platforms. In the past, content has always seemed so daunting and insurmountable, but this system has already allowed me to batch out some blog pieces, write posts for LinkedIn, and even script a video.
The creative I produce for myself (print materials, social media graphics, etc) is all templatized. I almost never have to start from scratch, and just need to play around with the words, images, and arrangement.
My entire client process runs beat by beat. I have a structure I like to stick to, and it helps me avoid PEM and burnout.
This is actually what inspired me to reposition my freelance practice towards what I call Brand Systems — because while I do it because of my ME, people who have to manage brands often spend way too much time, energy, or money on keeping up their presence, or neglect it entirely. I wanted to show people that there's a way to show up in the world without it becoming a second job.
In the time I've been unemployed, I've had the chance to more deeply understand what I care about, what helps me move through the world as my best self, and how I can set myself up for success in the future.
Conclusion
ME can be and is debilitating, and I'm grateful to be in a position where I can take the time to understand myself better.
I've adopted a set of philosophies, defined routines, and created tools to help me, but the thing that I know will stick with me until I die is the systems thinking. It's a funny way to put it because the term "systems" is quite operational, but it's how my brain best functions — giving myself guidelines to support the things I struggle with.
Things may get worse and they may get better, but for the moment, I'm well satisfied with my new worldview. Thanks for reading.
Some resources to learn more about ME:
