Misunderstood to Miss Understood

Not to jinx myself (and let me remind you of some of the terrible luck I had in 2025: on the morning I had a telehealth appointment where it was decided that I would be starting what would turn out to be 16+ weeks of daily IV antibiotics - one of which would give me blood clots in both of my arms and send me to the ER where I then contracted COVID, I walked out to my car in Albany to drive to my first dose to find that someone had smashed the window to my car), but the tides have shifted. At this point in time, I am having more good days than bad days. It’s a tremendous relief to be in a position to be doing things I love again, to feel good doing them, and to have the expansiveness to dream about what the future could hold. But that doesn’t mean that everything is back to normal or that I’m fully out of the woods yet or that I am who I once was.

[Pure bliss to be able to enjoy 2 feet of fresh powder in the Berkshires. Josh and I skinned up and skied down the backside of Mount Everett. First time on skis in 2 years.]

One constant over the past two years of ups and downs with illness has been the adage, “but you look great!”. It has come to replace “I don’t even like to drive that far!” as something often said when I would share the distances I like to run. The unfortunate reality is that my outward appearance has been a facade for how my body has actually felt and the excessive toll that Lyme, Bartonella, and Babesia have taken on me.

This has certainly come to highlight a hallmark that many people with chronic illness, or invisible illnesses, face. How you appear to the outside world doesn’t necessarily match your lived experience. And, unfortunately, I have learned that we are most often treated in accordance to our appearance in micro-moments.

Because of this lived experience, another constant over the last two years has been a persistent feeling of being misunderstood, while constantly being asked “how are you feeling?” Despite efforts to communicate through various platforms - whether it be written, in video, or in person, I’ve felt so misunderstood repeatedly that, at times, I’ve become concerned that I have a communication problem. In the end, I think I’ve accepted that unless someone has personally been through something very similar, it’s near impossible to truly understand. And that makes sense. We see and interact in the world based on our lived experiences (hello, also guilty) but that doesn’t make many of the conversations I’ve had or things that have been said to me any less frustrating or isolating.

Appropriately, my therapist has asked me, “what would you want to say to people to help them understand?” I’ve mulled on my response to this for quite some time, mostly while running, where the stream of responsive thoughts dangle in the universe and like a character in a video game, I collect them like aerial pick-ups, hoping to cache them away until the time to put everything on paper in a cohesive manner arrives. These deep brainstem monologues have ranged from anger fueled rants to deeply emotional pleas for understanding and empathy.

[Another day of snow in the Berkshire.]

I listened to a recent interview with my favorite musical artist, Josh Ritter, on World Cafe where he answers prompts around his music. In one very personal response to a prompt he discusses his experience with bipolar disorder and he gives the line

“No one can report back in the middle of an assault.”

Mic drop. For so long - longer than I initially even knew - I have been under assault from these tick borne illnesses. But now, here in the new found moment, removed from the frontlines, capable of more expansive thinking, the time has come to activate all of my pick-ups and to finally release this thought experiment from my brain. To migrate from misunderstood to Miss Understood.

[It has been a very icy, cold, snowy winter here but everyday I am grateful to be surrounded by these woods.]

I must be fine, because I look fine.

This is essentially just the but you look great argument. I actually get it. Even at my worst I was probably still more fit and physically capable than the majority of Americans. It helps that, generally, thinness absent extreme thinness, is usually automatically (and unfairly) equated with health. If anyone looked closely over the last two years, they may have seen more subtle signs. The inexplicable weight gain despite eating healthier than ever and continuing to exercise (walking) at lengths more than the recommended minimums, a confusing and frustrating side effect of tick born illnesses caused by a variety of factors - chronic inflammation, mitochondrial damage, metabolic shifts, and water retention. The red eyes. An explosion of grey hairs. An endless list of new environmental and food allergies. Needing to carry an epi pen everywhere I go. And these are just the handful of physically observable attributes, not the endless unseen physical and mental ailments that contradict the notion of fine.

And, it should be noted, that unless you are my husband, family, doctor, or part of a handful of very close friends, if you are seeing me, you are only seeing me on my best days for a very short period of time. A very small percentage of my lived hours and the ultimate selection bias.

Simply because I am running, I must be back to normal.

What this ignores is everything about pace, volume, and how it actually feels inside my body. There is a big difference - and a large spectrum - between being able to go for a jog and being able to train at an elite level. For a few weeks, I couldn’t even run. Then I could jog. Then I could run. And finally I could train. But I am still so far from where I was. Just over 2 years ago, I was running 100 mile trail weeks (16+ hours/week) and raced a 15k (a little less than 10 miles) just slower than 6:00 min/mile pace. As of today, I am (comfortably) hovering around 50-60 hilly road mile weeks (7-9 hours/week) and could maybe hold 6:00 min pace for 8-10 minutes if I really had to.

For several months, ramping back up running didn’t feel great but I was doing it because I could and because I (eventually) believed and hoped that I would one day get to where I am now, which is a place of feeling good, sometimes even great, while doing it. I also did it out of tremendous stubbornness, refusing to accept a medical prognosis of never being the same athlete, let alone of never being better than I was. I did it with the choice of moving through difficult and uncomfortable times to chase bigger dreams, because the level at which I would have to break in order to not do so is somehow beyond the level of broken I was.

The progress I’ve made feels tremendous, but I still have to contend with where I am versus where I was and the fact that this is a comeback from a set of illnesses that have forever changed my physiology and have the potential to derail me at any point in time. The latter of which is particularly frustrating as an athlete because it doesn’t necessarily matter how smart you are with your training because this isn’t a traditional injury risk and is so much more beyond my control than a running related injury. I, and others, sometimes forget that recovery can be a long process. I had been acutely unwell for at least 2 years. No one would, or should, reasonably assume that someone with a life changing event, who had been sick for so long would rebound back into “normal” life after a few months. More likely, we would assume that the entirety of their life - dreams, aspirations, desires, actions - have dramatically changed and that true recovery would take at least as long as time spent at the bottom of the barrel. So if you see me on a new path and you’re not sure why, it’s because I’m still recovering, grieving, processing, and discovering. I’m learning to ask and search more deeply about what I want out of this life.

[A little Catskill hike with some friends. The view from High Rock.]

Just because I am no longer in daily IV treatment, and don’t work a traditional 9-5 job, I have an abundance of time and energy.

Beneath this seems to live the societal norm that having a traditional 9-5 is a requirement for being a valuable member of society. And that if you don’t have one you must be bored and looking for something to do. Despite running making up a large portion of my personality, I also love to write, read, cook, and make art. All four of which are near impossible to do when you’re part of the system and part of the grind (or, under assault).

I’m also trying to break myself free from the notion that I must use the major listed on my higher ed degrees, or work in a traditional setting, to be seen as valuable to society. I would never condemn anyone else for living the way that I’m living, so why am I so willing to allow myself to feel ashamed? I feel that I contribute in many ways - some visible, many not. There would have been a time in my life where I would have tried to balance high level running, a slew of hobbies, volunteering in my community, and working a 9-5. We’ll call it borrowed time for sure. I can no longer do that. I do not have the capacity or desire to juggle an infinite number of things.

I know not everyone, chronic illness or not, has the flexibility to remove themselves from the 9-5 grind, and I don’t take the privilege lightly. Surely the paycheck and health insurance (and ideally the moral value) from a 9-5 (like my former job as an economist at the NYISO) would be nice, but I’m extracting a lot of value - and hopefully providing a lot of value - from the things I’m working on now and I’m doing most of it out of kindness and love and at my own pace, which seems like a pretty sustainable way to be living, especially when we’re all really just trying to figure out what is the meaning of all of this anyways?

[Quintessential New England, amiright?]

Because I am healing and feeling better, my life is “normal”.

There is so much here. To start, I’m still taking a ton of medication and supplements. Four times a day, I choke down pills and various liquids, hoping they will all eventually heal me while I deal with their short term side effects. I still have regular doctor appointments and still pay for everything out of pocket while also paying an absurd amount for health insurance that won’t even acknowledge these tick borne infections.

And then there are the unseens and all of the feelings around what I’ve already described. The constant carrying of fear that today could be the “last good day”. Wearing a mask in public spaces. Having to worry and wonder if those you want to spend time with have been exposed to illness and if it’s coming for you. Feeling panicked when you spend time with someone, your husband, who just traveled and was at a conference, and how it potentially puts you at risk. Wondering if you’re doing enough. Wondering if you’re doing too much. Some days still not being able to breathe. Is it a flare up? Do I still have an active infection? Simply not being able to do as much as you used to. Not wanting to do as much as you used to. Fighting against the grain of hustle culture and the assumption that being stressed is normal and we just have to learn how to deal with it. Feeling less than for not working a “normal” job. Having the work you are trying to do undervalued and underappreciated. Feeling selfish for taking time to rest, to be creative, or to be alone. Wanting to be open and share but fear of judgement. Fear that if you don’t share you’ll be misunderstood. Taking the time to share and still being misunderstood. Dealing with other people’s emotions and opinions. Living in this world as an empath while fellow citizens are shot in the face by the government. Worried that your nervous system will never be fully regulated because you’re chronically ill, empathetic, and you’re a woman so you are supposed to take care of others, never yourself, while you walk around in fear of bacteria and parasites you can’t see and men that you can. Feeling that people will be mad at you for bailing/not wanting to do things/taking longer to get back to them/not following through on projects.

Phew.

[Some spectacular late afternoon light.]

Living in a body and with a mind that feels very different from what you’ve known for 30+ years is disorienting. Grappling with chronic illness makes you question everything and search for what you truly want.

And what I want is

…to run freely, powerfully, and adventurously.

…to spend time with people who love and support me unconditionally.

…to reunite with my creativity.

…to start new projects and be okay with failing.

…to let go of the “shoulds”.

…to understand and acknowledge where I’m providing value.

…to be unashamed of the path I choose.

…to feel understood.

If you made it this far, thank you. I hope you learned something new about me, someone you know, and maybe even about yourself too. Thank you for letting me explain myself and hearing (reading) my words. For holding space for me to feel heard.

Lastly, there’s one more thing I want to make sure is said.

To the people who didn’t try explain away my experience, rush it, or compare it, but instead let it be complicated, slow, and sometimes invisible:

Thank you for staying.
Thank you for believing me when there was nothing obvious to see.
Thank you for adjusting plans, tolerating uncertainty, and giving me space to come back in pieces instead of all at once.

Being understood isn’t always about fully “getting it.” Sometimes it’s simply about allowing someone to exist as they are.

I’m deeply grateful for the people who offered, and continue to offer, that space.

-Miss Understood

[Not ready to change sports yet, but enjoying winter as much as we can.]