Elevating the conversation around empathy is a focus of The Zebra Chronicles. But a prerequisite to demonstrating empathy is understanding, or, equally important, the desire to understand.

When my son, Joshua, first began experiencing symptoms that would later be identified as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), I was in denial. And ignorant. I was familiar with Joshua’s struggles with fatigue because of his Crohn’s Disease and assumed that he was also fatigued of constantly battling illness. I worried that he was depressed. I urged him to think more positively and try to “push through it.”

The truth is, I didn’t understand ME/CFS. And if I was going to be a compassionate, empathetic support for him, I had much to learn. What follows is a conversation between us that is specific to ME/CFS but the effort to be more empathetic applies to any situation that calls for being aware of, and more sensitive to, the experiences, feelings, and thoughts of someone who is going through a struggle that we cannot fully appreciate.


Mitchell: How Did You Get Diagnosed with ME/CFS?

Joshua: I was doing relatively okay (managing my usual Crohn’s symptoms) until early in 2021, during the Covid pandemic, when I had pneumonia followed by a wave of strange symptoms. My mind went blank; my heart raced; I felt dizzy; my face was flushed; and I felt fatigue in a way I’d never experienced before.

Some providers thought it was a post-viral illness that would go away on its own.

Others noted that my symptom presentation was similar to their patients with lingering fatigue and other symptoms post COVID, now more commonly known as LONG COVID. But no one had definitive answers.

I decided to take my medical matters into my own hands, like a music producer ensuring that all the essential elements for a great recording are in place. I studied scientific literature. I read blogs and watched videos. I plugged into the very helpful, very active and supportive online patient community. I knew that the fatigue I felt was different than anything else I’d ever experienced. I soon learned a lot more about what was going on.

One doctor eventually gave me a diagnosis of ME/CFS but in reality, I had unofficially diagnosed myself first.


Mitchell: What would you like people to know about how it feels to have ME/CFS?

Joshua: When most people think about fatigue, they are probably thinking about being tired—like after a tough basketball game; a long work shift; an intense school exam; or a late night out partying. ME/CFS is more than just fatigue. If you are in generally good health, you bounce back from that game; that work shift; that exam; and even that hangover. I can’t bounce back, even after doing something far less strenuous.

What I experience is called “post-exertional malaise (PEM),” and it is one of the hallmarks of ME/CFS. PEM is defined by the Bateman Horne Center of Excellence, a specialty clinic focused on the diagnosis and treatment of ME/CFS and other post-viral syndromes as the “inability to recover normally following physical, cognitive, or emotional exertion [resulting in] a level of fatigue that is more profound, more devastating, and longer lasting than is observed in patients with other fatiguing disorders.”

For me, a “crash” can happen within a few minutes or hours after a trigger and PEM can occur days later. It feels like having the flu that doesn’t go away. Even if PEM is not triggered, I rarely experience a time when I don’t feel fatigued. As you know, I’ve had fatigue for a long time, mostly when my Crohn’s Disease was flaring. But when it was in remission, I felt healthy. Now, even when I rest in bed, even after sleep, I still don’t feel rested or healthy.


Mitchell: What does “healthy” mean to you?

Joshua: It means feeling refreshed, like people do after a good night’s sleep. I don’t get that feeling now. Ever. It means not always feeling run down, like my gas tank is empty. I don’t expect health to be prefect—it isn’t for a lot of people—but for me, healthy would mean that I don’t have to think about health all the time. It would mean I could do things my mind wants to do (like play music) that my body is resisting.


Mitchell: As you mentioned, fatigue, or feeling tired, is something many of us are familiar with. Tell us a little more about how ME/CFS feels different than just being tired, or even how it feels different than the fatigue you experienced with Crohn’s?

Joshua: Just a few years ago, I often played video games with a friend until 3am. Of course, I was tired the next day. But soon I was ready to go at it again. Now there are long-term repercussions. Simply making a few doctor appointments and going to a grocery store can set off a case of PEM, which can leave me bedbound and take days to recover from. And then it’s not like I’m recharged at 100%. I’ve found that the recharge bar was set lower each time I over-exerted. Now I know that I must carefully pace myself and try to avoid setting off PEM in the first place. It’s like I’m on a leash. The days of 3am video games are long gone.


Mitchell: You mentioned PEM before. Can you tell us more about what that feels like for you?

Joshua: My face feels flushed. Sometimes, I have a low-grade fever or migraines. My muscles ache. And my eyelids can feel like they have weights on them to the point that keeping them open is a strain. Imagine having jet lag that doesn’t go away. That’s my baseline. It just gets twenty times worse when PEM is triggered. At those times, I can’t even get up from the couch or bed; or even talk to family.


Mitchell: I know that having ME/CFS, on top of all the other health issues you are dealing with, is taking an emotional toll on you. Can you tell us about that?

Joshua: It’s horrible. I feel like I am in this bubble while the world passes me by. I want to do so many things. I want to make music. I want to make friends and date and be a normal kid. I don’t want my parents worrying about my future.


Mitchell: What is the one thing about ME/CFS that you think would most surprise people?

Joshua: That the “typical” rules for managing illness or keeping healthy don’t apply. Diet and drinking plenty of water are important but exercising and “pushing yourself through it” is the worst thing you can do. As I said, each time you push yourself past the point your body wants it to, the energy recharge bar sinks lower. For some people who have either been listening to the “typical” advice, or who don’t manage their energy level, their battery can drain to the point where PEM is permanent. In severe cases, some are bedridden for long periods of time; others cannot talk or eat on their own.


Mitchell: You had your heart set on returning to NYU and pursuing your musical passions in the fall of 2022, yet you decided to take medical leave instead. Tell us about that.

Joshua: My medical team urged me to go back to school and take a light course load. They thought that the social and intellectual stimulation would be a good thing for my emotional state—a distraction from thinking and dealing with illness nearly 24/7. I also was eager to begin school. I walked by my dorm and classroom buildings, admiring the quaintness of Greenwich Village, a ‘small’ town in the middle of this huge city.

But on the train back home to Baltimore, I experienced the worst onset of PEM I ever had. I was drenched in sweat. My head throbbed in pain. How would I manage to pace myself at NYU? What would be the consequences if I misjudged my exertion in a demanding music program—in hectic New York of all places! Was it worth jeopardizing my future health? Medical providers can give you advice, but at the end of the day, they go home to their lives. The stakes for my life were in my hands.


Mitchell: What are you doing now?

Joshua: I moved to Los Angeles in January 2023 to have better access to specialists. I knew it would be challenging to manage on my own with my family still in Baltimore, but I was determined to give myself the best chance of getting better. I also wanted to continue pursuing my musical ambitions and Los Angeles is certainly one of the best places to that.

There have been several setbacks—a hospitalization and some pretty bad ‘crashes’—but on the whole I feel like I made a good decision. I’ve learned how to pace myself and adapt to my new “normal.” My energy envelope is limited, so I strategically plan out the one or two more important things I need to prioritize on any given day. Most of that energy is devoted to health-related tasks: Making appointments, traveling to clinics and labs, preparing medical records, and dealing with insurance issues like prior authorization.

But I’ve also returned to music. I was able to take a summer music class at UCLA with an amazing professor (and got an A+, I might add), and this Fall I am taking another music class at Santa Monica Community College. These are ‘baby steps,’ but that I am taking steps at all is progress.


Mitchell: Do you feel sorry for yourself?

Joshua: I do feel waves of sadness when I am stuck at home and think about all the experiences I am missing – when it seems like life is passing me by. I also think about how this is the not the life I had planned—how this is not version of myself I had envisioned. I have a sort of PTSD when I relive that visit to the NYU campus and the PEM that I experienced afterwards.

But I also think about all that I’ve learned. Before ME/CFS, I did what a lot of kids my age do—waste time. I don’t have the luxury to waste time anymore. I appreciate every moment of energy I’m given and try to make it the most of it. I want to make this version of me the best version it can be.

I don’t wish illness on anyone just to teach life lessons, and certainly did not wish it for myself, but there is at least one important message that emerged from my very long, very challenging, and still ongoing health journey: The need for empathy. Imagine if empathy and compassion replaced all the intolerance and indifference in the world.

If The Zebra Chronicles can make even a small difference in spreading that message of empathy and compassion, I would feel gratified that whatever little amount of energy I have will have empowered something bigger than myself.