I am very sick

I have not been able to walk since February 18, 2023.

When people ask me how I'm doing, this is the first thing that comes to mind. "Well, you know, the usual, but also I still can't walk," I think to myself.

If I dream at night, I often see myself walking or running. In conversation, if I talk about going somewhere, I'll imagine walking there. Even though it's been over a year, I remember walking to the bus, riding to see my friends, going out for brunch, cooking community dinners.

But these days, I can't manage going anywhere except by car, and I can't do the driving, and I can't dis/assemble and load my chair. When I'm resting in bed and follow a guided meditation, I might be asked to imagine walking up a staircase, step by step. Sometimes, I do. Other times, I imagine taking a little elevator in my chair, or wheeling up ramps.

I feel like there is little I can say that can express the extent of what this illness has taken from me, but it's worth trying. To an able-bodied person, seeing me in a power wheelchair is usually "enough." One of my acquaintances cried when they last saw me in person. But frankly, I love my wheelchair. I am not "wheelchair-bound"—I am bed-bound, and the wheelchair gets me out of bed. My chair hasn't taken anything from me.

***

In October of 2022, I was diagnosed with myalgic encephalomyelitis.

Scientists and doctors don't really know what myalgic encephalomyelitis (ME) is. Diseases like it have been described for over 200 years.1 It primarily affects women between the ages of 10-39, and the primary symptom is "post-exertional malaise" or PEM: debilitating, disproportionate fatigue following activity, often delayed by 24-72 hours and not relieved by sleep. That fatigue has earned the illness the misleading name of "Chronic Fatigue Syndrome" or CFS, as though we're all just very tired all the time. But tired people respond to exercise positively. People with ME/CFS do not.2

Given the dearth of research and complete lack of on-label treatments, you may think this illness is at least rare, but it is actually quite common: in the United States, an estimated 836k-2.5m people3 have ME/CFS. It is frequently misdiagnosed, and it is estimated that as many as 90% of cases are missed,4 due to mild or moderate symptoms that mimic other diseases. Furthermore, over half of Long COVID cases likely meet the diagnostic criteria for ME,5 so these numbers have increased greatly in recent years. That is, ME is at least as common as rheumatoid arthritis,6 another delightful illness I have. But while any doctor knows what rheumatoid arthritis is, not enough7 have heard of "myalgic encephalomylitis."

Despite a high frequency and disease burden, post-viral associated conditions (PASCs) such as ME have been neglected for medical funding for decades.8 Indeed, many people, including medical care workers, find it hard to believe that after the acute phase of illness, severe symptoms can persist. PASCs such as ME and Long COVID defy the typical narrative around common illnesses. I was always told that if I got sick, I should expect to rest for a bit, maybe take some medications, and a week or two later, I'd get better, right? But I never got better.

These are complex, multi-system diseases that do not neatly fit into the Western medical system's specializations. I have seen nearly every specialty because ME/CFS affects nearly every system of the body: cardiology, nephrology, pulmonology, neurology, opthalmology, and, many, many more. You'd think they'd hand out frequent flyer cards, or a medical passport with fun stamps, but nope. Just hundreds of pages of medical records. And when I don't fit neatly into one particular specialist's box, then I'm sent back to my primary care doctor to regroup while we try to troubleshoot my latest concerning symptoms. "Sorry, can't help you. Not my department."

With little available medical expertise, a lot of my disease management has been self-directed in partnership with primary care. I've read hundreds of articles, papers, publications, CME material normally reserved for doctors. It's truly out of necessity, and I'm certain I would be much worse off if I lacked the skills and connections to do this; there are so few ME/CFS experts in the US that there isn't one in my state or any adjacent state.9 So I've done a lot of my own work, much of it while barely being able to read. (A text-to-speech service is a real lifesaver.) To facilitate managing my illness, I've built a mental model of how my particular flavour of ME/CFS works based on the available research I've been able to read and how I respond to treatments. Here is my best attempt to explain it:

The best way I have learned to manage this is to prevent myself from doing activities where I will exceed that aerobic threshold by wearing a heartrate monitor,12 but the amount of activity that permits in my current state of health is laughably restrictive. Most days I'm unable to spend more than one to two hours out of bed.

Over time, this has meant worsening from a persistent feeling of tiredness all the time and difficulty commuting into an office or sitting at a desk, to being unable to sit at a desk for an entire workday even while working from home and avoiding physically intense chores or exercise without really understanding why, to being unable to leave my apartment for days at a time, and finally, being unable to stand for more than a minute or two or walk.

But it's not merely that I can't walk. Many folks in wheelchairs are able to live excellent lives with adaptive technology. The problem is that I am so fatigued, any activity can destroy my remaining quality of life. In my worst moments, I've been unable to read, move my arms or legs, or speak aloud. Every single one of my limbs burned, as though I had caught fire. Food sat in my stomach for hours, undigested, while my stomach seemingly lacked the energy to do its job. I currently rely on family and friends for full-time caretaking, plus a paid home health aide, as I am unable to prep meals, shower, or leave the house independently. This assistance has helped me slowly improve from my poorest levels of function.

While I am doing better than I was at my worst, I've had to give up essentially all of my hobbies with physical components. These include singing, cooking, baking, taking care of my houseplants, cross-stitching, painting, and so on. Doing any of these result in post-exertional malaise so I've had to stop; this reduction of activity to prevent worsening the illness is referred to as "pacing." I've also had to cut back essentially all of my volunteering and work in open source; I am only cleared by my doctor to work 15h/wk (from bed) as of writing.

***

CW: severe illness, death, and suicide (skip this section)

The difficulty of living with a chronic illness is that there's no light at the end of the tunnel. Some diseases have a clear treatment path: you take the medications, you complete the procedures, you hit all the milestones, and then you're done, perhaps with some long-term maintenance work. But with ME, there isn't really an end in sight. The median duration of illness reported in one 1997 study was over 6 years, with some patients reporting 20 years of symptoms.13 While a small number of patients spontaneously recover, and many improve, the vast majority of patients are unable to regain their baseline function.14

My greatest fear since losing the ability to walk is getting worse still. Because, while I already require assistance with nearly every activity of daily living, there is still room for decline. The prognosis for extremely ill patients is dismal, and many require feeding tubes and daily nursing care. This may lead to life-threatening malnutrition;15 a number of these extremely severe patients have died, either due to medical neglect or suicide.16 Extremely severe patients cannot tolerate light, sound, touch, or cognitive exertion,17 and often spend most of their time lying flat in a darkened room with ear muffs or an eye mask.18

This is all to say, my prognosis is not great.

But while I recognize that the odds aren't exactly in my favour, I am also damn stubborn. (A friend once cheerfully described me as "stubbornly optimistic!") I only get one shot at life, and I do not want to spend the entirety of it barely able to perceive what's going on around me. So while my prognosis is uncertain, there's lots of evidence that I can improve somewhat,19 and there's also lots of evidence that I can live 20+ years with this disease. It's a bitter pill to swallow, but it also means I might have the gift of time—something that not all my friends with severe complex illnesses have had.

I feel like I owe it to myself to do the best I can to improve; to try to help others in a similar situation; and to enjoy the time that I have. I already feel like my life has been moving in slow motion for the past 4 years—there's no need to add more suffering. Finding joy, as much as I can, every day, is essential to keep up my strength for this marathon. Even if it takes 20 years to find a cure, I am convinced that the standard of care is going to improve. All the research and advocacy that's been happening over the past decade is plenty to feel hopeful about.20 Hope is a discipline,21 and I try to remind myself of this on the hardest days.

***

I'm not entirely sure why I decided to write this. Certainly, today is International ME/CFS Awareness Day, and I'm hoping this post will raise awareness in spaces that aren't often thinking about chronic illnesses. But I think there is also a part of me that wants to share, reach out in some way to the people I've lost contact with while I've been treading water, managing the day to day of my illness. I experience this profound sense of loss, especially when I think back to the life I had before. Everyone hits limitations in what they can do and accomplish, but there is so little I can do with the time and energy that I have. And yet, I understand even this precious little could still be less. So I pace myself.

Perhaps I can inspire you to take action on behalf of those of us too fatigued to do the advocacy we need and deserve. Should you donate to a charity or advocacy organization supporting ME/CFS research? In the US, there are many excellent organizations, such as ME Action, the Open Medicine Foundation, SolveME, the Bateman Horne Center, and the Workwell Foundation. I am also happy to match any donations through the end of May 2024 if you send me your receipts. But charitable giving only goes so far, and I think this problem deserves the backing of more powerful organizations.

Proportionate government funding and support is desperately needed. It's critical for us to push governments22 to provide the funding required for research that will make an impact on patients' lives now. Many organizers are running campaigns around the world, advocating for this investment. There is a natural partnership between ME advocacy and Long COVID advocacy, for example, and we have an opportunity to make a great difference to many people by pushing for research and resources inclusive of all PASCs. Some examples I'm aware of include:

But outside of collective organizing, there are a lot of sick individuals out there that need help, too. Please, don't forget about us. We need you to visit us, care for us, be our confidantes, show up as friends. There are a lot of people who are very sick out here and need your care.

I'm one of them.