No amount of success made me feel any better about myself

Russell Nohelty on "beige living," managing our stressors, and being kind to future Russell

Oct 12, 2023

Welcome to the Lady’s Illness Library, a collection of stories about unconventional illness journeys. Here, we’re eschewing the internet’s many prescriptive and often unhelpful health tips in favor of exploratory first-person accounts. Diseases that are multifaceted, sort-of-undiagnosed, and debilitating are more common than ever, affecting majority women, mostly for unknown reasons. And yet, despite their growing ubiquity, they still live beneath the surface of our culture. Let’s change that.

Russell Nohelty

is a Substack powerhouse, guiding writers on growing an audience, self-publishing, and generally making a living as a writer through his newsletter

The Author Stack

. He owns a publishing company, Wannabe Press (with the amazing tagline “weird books for weird people”), where he has written over 40 novels and produced over 1,000 pages of comics. He also co-founded Writer MBA, where he co-created the Author Ecosystems archetyping system to help authors thrive by leaning into their natural tendencies, and co-founded the Future of Publishing Mastermind.

He has also spent much of his life in various states of chronic illness, mostly with diseases that statistically strike majority women (and I’m thrilled to have our first man represented here at LIL!). This has included an unusual type of migraine, depression, thyroid dysfunction, and most recently, long COVID. Here Russell talks about the long road to self acceptance and some of the various transformations along the way, all with a bit of wry self-deprecation and humor which I found very enjoyable.

You can find additional resources from Russell at the end of the interview.

Key themes from this conversation:

A toxic element of positivity culture is the idea that there’s always an answer. Lots of times there isn’t an answer, there’s just mystery and guesses. Usually we can’t control the outcome of illnesses–maybe we can manage or shift it, but much of it is out of our control.
We often have positive and negative attributes that stem from the same place. A bad habit and a superpower can come from the same character trait. A loss and a gain can come from the same experience with chronic illness.
Moods can affect the physical body and capabilities profoundly, which Russell realized and internalized through interactions with his wife, who reacts to stress completely differently than Russell.
Russell prevents migraines by wearing red glasses that make him look like “Scott Summers meets Daredevil” 😎

Rae Katz: Starting with the basics. In your own words, what is your illness or set of challenges that you struggle with?

Russell Nohelty: I think it's easiest to break it up chronologically and also by physical and mental. Starting with the physical symptoms: when I was 20, I had a long distance girlfriend. I drove down to see her and we hung out for the weekend, and when I came back home she tells me, by the way, I've been cheating on you, and I have mono. She was 19, I don't hold any ill will–that's how 18, 20 year olds behave, right? Like they are immortal.

And so I got a pretty bad case of mono. But I just kept going–I would mask up and go to class. And then I'd come home and I'd just quarantine myself. This went on for like six months and I never really recovered from that.

I ended up meeting my wife soon after, and it was kind of fine for about seven years, and then I got Graves’ disease, which my mother also had. My sister has Hashimotos–everyone in my family has thyroid conditions of some type. I really didn't want to get radiation treatment, so I spent nine years on medications trying to find a balance. Then my medication stopped working two years ago, and I almost died. They needed to irradiate my thyroid and it made my entire body go haywire.

RK: That is so scary. What was the ongoing experience of living with Grave’s?

RN: I was 28 when I was officially diagnosed, and I would basically be asleep for hours. I would have two hours of energy a day. I was lucky if I could get off the couch for four hours.

RK: Wow. Okay–we'll come back to that. So we're still doing the overview–what else?

RN: I also struggled with migraines when I was a kid, but I had not dealt with them until 2020. I run a publishing company and I had been doing a lot of conventions, and when the world stopped, my body just…I don't know…it all caught up with me. I started having these really severe symptoms–it wasn't even necessarily pain. I didn't know there was a “silent migraine” that could give you all of the problems of a migraine except pain. So I thought I had vertigo and nausea and all of this stuff. It turns out it was a migraine. The reason I wear red glasses whenever I’m at my computer is because I have these crippling silent migraines, and it's caused by blue light. Since I've had these glasses, I haven't had serious episodes.

RK: Can you just describe the glasses?

RN: Sure. Most people know what blue blockers are, but they block only ten to twenty percent of blue light. These red ones that I have make me look like Scott Summers meets Daredevil; they block 95% of blue light. It looks like I'm in the apocalypse, everything is red. But in return, since I've been wearing them, I've gotten almost zero migraines. I brought these to Comic Con and I wore them for five days and I felt great the whole time. That was one of those moments in my life where I was like, “how did I ever live like that?

RK: Wow, what a change. Can you talk a little about the mental health side? I am also interested in how you think about the connection between the two.

RN: So I I didn't know until I got on antidepressant medication that every person doesn't hear a voice in their head all day telling them to kill themselves.

RK: How old were you when those thoughts started?

RN: As old as I can remember–maybe thirteen? Eighteen for sure. I can't remember a time where there wasn't a voice in my head. If something went wrong, it would just be like, “maybe you should kill yourself.” It was just a constant thing. And that would lead me to doom spiral and doom spiraling would lead me to more suicidal thoughts.

Then one day, very soon after I got on meds, I woke up and was…I was fine. Bad things would happen, and I'd be like, whatever, it will probably be fine. I'm forty and I started this medication three years ago, so pretty much for thirty years of my life, anytime one thing went wrong, I would just spiral into oblivion.

RK: That's a long time to live with those thoughts.

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RN: The day that it changed, I said to my wife, “I have a question for you. Does everyone not have thoughts of suicide constantly all day every day?” And she was just like, “no, people never have that thought.” And it was another moment where I was like, how did I get anything done in my life? I felt like I suddenly started playing the game on easy because the Graves’ wasn't making me so exhausted that I couldn't move, the migraines were not happening, and I stopped having suicidal thoughts. I have long COVID now, but compared to all of the other stuff, it's like a dream.

RK: Wow, it sounds like you have been through multiple transformations.

RN: Look, I am a het, white, cis, middle class man, and I was every bit the shitbird that you would expect someone who has that designation to be. I wasn’t a bad human, just completely naïve to any other condition. I would hope that I would have gotten there without all of these things. But illnesses like these definitely open your eyes to the fact that people suffer silently all the time, all day, every day.

Having all of these things happen one after another after another, if nothing else, it gave me perspective. That is a very rosy picture of the whole thing. Don't get me wrong, I'm not happy that any of it happened to me. But when my wife finally got diagnosed with chronic fatigue syndrome, I was like, I know exactly how to handle this. I've already been down this road for twenty years.

RK: What had you gleaned that you then wanted to pass on?

RN: You get a lot of resentment at first. It's hard to see yourself not doing the things that you used to do, not being able to perform them as well or at all. Like if you love cooking and you have a chronic illness, especially something like chronic fatigue syndrome, you can't really cook because you can't stand for two hours to do it. Or if you do, it really affects you the next day. So since I have long COVID, if I overexert myself then two days later I will feel it. And if I keep doing it day after day after day, it will just compound the terribleness. So you have to learn how to moderate yourself and how to let things go.

Sometimes my wife has to use a scooter or a wheelchair to sit down at a show–she can't stand up and sing at a concert for four hours. I also can't do that. Being able to make peace with that lack of ability is very hard. I think it took me a decade at least. It's like grieving somebody but the person you've lost is some aspect of yourself, one that you probably used to take for granted.

RK: It’s interesting because this experience of not being able to do the things you used to do–everyone has that experience eventually. Some people just get to have it when they're seventy, if you're really lucky. It's just a question of when it happens.

I know you’ve written about positivity culture–can you tell us some of your thoughts there?

RN: I hate positivity culture. The biggest problem with positivity culture is that they think there's an answer. Do you know how little we know about the human body? We are very good at dealing with about twenty diseases, and there are a billion diseases where the answer is: we're going to try medication with you until you give up or we find one that works. We don't know why it works. I think the toxic part of positivity culture is the idea that you can change the outcome significantly. You might be able to manage the outcome, you might be able to improve the outcome, but almost never can you completely reverse the outcome, and almost never do you even fully understand that it works.

RK: In one of your pieces of writing you describe that you're trying to be very “beige,” almost in contrast to positivity culture. I'm curious if you could talk more about what that effort looks like on a day to day basis.

RN: I decided some years ago that I would be willing to give up the elated highs–which I don't even think is that great anyway because it makes you numb to everyone around you–if I could cut off the bottom of the lows. I don't want to lash out.

So I spend a lot of time putting myself in situations where I can win. Like I know I get stressed when I don’t have time to finish something. I need to leave double the time that even the worst estimate says so that I will not be late, because when I am late I lash out. It happened the other day–I left my house 10 minutes late and I hit traffic, and I flipped out. I was by myself, thankfully. It doesn't happen a lot, but I think that it mostly doesn't happen because I do a lot to manage my environment to put me in a position where things can go well.

I'm privileged, my wife and I make a good income. We don't have any kids. We're able to make sure the stressors don't overwhelm us. But I do think that what I manage is not so much the disease. It's the conditions by which I walk through life. And in doing that, I'm able to end most days with an energy surplus instead of an energy deficit.

RK: So it sounds like your ideas around neutral thinking and beige living includes cutting out the extreme negatives, but also that requires cutting out the extreme positives, too. Can you say more about that?

RN: Yeah, I think of it like a seesaw. The closer I live to the middle of the seesaw, the less I have wild mood swings on the edges of the seesaw. If I let myself have a huge positive, then my body gets amped up, and I get this huge rush of adrenaline, and that swings me back much more easily to the other side.

It's not that I never take the risk of having huge happiness. It's just, I particularly don't like how I am when I am chasing that emotion. And I feel like, more than most emotions, it can lead to chasing dopamine like a drug.

RK: One thing I'm noticing as you talk, is how you're referring to various hormones and physiological responses resulting from moods, and then connecting these physiological responses with your physical health. That’s interesting because I don't think that's usually how our culture thinks about mood and the effects of moods on physical health.

I'm wondering how this awareness emerged for you, the awareness that your moods alone–which seem kind of not real to a lot of people–have such a real impact on your actual physical being.

RN: I lash out in stress, but my wife turtles in stress. We’re the exact opposite. I have had to learn that if I raise my voice, even in excitement, it would negatively impact her. She would jump or startle or just run away, and I didn't understand it for a long time.

Then I learned about Enneagram, and that helped me understand how I act in stress and how she does. So the awareness mostly came from recognizing how it affected somebody else. Then, once I was able to tamp down my reactions somewhat, I started to feel physically better, like I could control my body more.

RK: That’s fascinating.

RN: One of the other reasons why I try to find middle ground is because I find it easier to make rational observations about myself. It's much harder in stress or elation. Because I have long COVID, I have to be able to say: “if I do this thing now, then in two days it will be bad.” Minds are not good at projecting into the future like this.

One of my mantras is “be kind to future Russell.” But in stress…that guy is not good to future Russell. Super happy guy also isn’t kind to future Russell, he’s like “everything's going great! This is amazing. How do I keep this dopamine rush going?” It's only in that center where I can say, “no, this isn’t worth it,” or, “yes, this is worth it.” There definitely are things that are worth screwing over future Russell. Like we went to see Taylor Swift on Monday. Current me hates past me, but that was a good “screw future Russell” decision.

RK: An interesting extension of this idea is that in some ways everyone is living with these types of decision-consequence patterns, but for people with chronic illness it’s a lot more obvious.

RN: Yeah. My wife got really into personalized medicine and did the glucose tracker, and it's shocking to look at those graphs and see, oh, if I have nuts before an apple, I don't have a glucose spike. But if I have these things in another order you can literally watch the spike. So you can say, oh, these things cause my body stress.

RK: Make total sense. Given that, though, how do you move through the world in a way that doesn't feel like everything is a potential danger? One of the pitfalls I've found is that once you open the door to noticing the things that might cause stress, suddenly you could consider every food combination, you could consider every tiny decision, and that also takes a ton of energy and wears you down. So I'm curious how you balance that.

RN: You just gotta let a lot of stuff go. A lot of stuff will cause you stress, but most things won’t. Like there are probably things you can't eat, but also things you can still eat, like maybe you can’t eat pizza but can still eat ice cream. But yeah, frankly I’d have no idea how to help anyone let go of anything, it’s really hard.

RK: One thing I'm hearing in your story is just…time. I mean, you've been at this for a really long time.

RN: I have been at it for a long time and I've had a lot of time to deal with resentment. Ultimately, you have to learn how to identify with the thing that you are in a positive way, whether that's a mother or a doctor or a person with chronic illness. For example, I've talked to so many people, both who have become successful writers and who have not, and the ones who are happy are the ones who have made peace with the fact that just because you are not that thing that you always wanted to be does not mean you are any less awesome. I can tell you, as someone whose self-worth was tied to my success, because I felt like I was worth nothing for so long, that no amount of success made me feel any better about myself.

For me, it all came down to being comfortable with the person who exists. I'm way more compassionate than I ever was before, and that's a positive. I'm also way less physical than I was before, and like I don't like that, but I do like other aspects of my personality and who I have become. There are parts of me that I absolutely hate. But there are parts of me that other people and myself love, and a lot of the positives come from the same place as the negatives. Like the lashing out–that comes from the same place drives my desire to help everyone and get people excited. My job is to figure out how to harness the positiveness of it without subjecting people to the negativeness of it.

RK: Given all this, given how long you've been at this, given where you're at, I'm curious how you think about the future.

RN: I have a conference called The Future of Publishing Mastermind, so I have to think about the future a lot. And every year I become more optimistic about what people are willing to hear. People forever were unwilling to hear that there wasn't an answer. But it feels like people are much more likely now to say, oh, there's not really an answer.

Also, these days, more often I say, “I can't do that,” and people are like, “I get it. I also can't do it.” It used to be that the response was always “I can do it.” And I’m like, really? You've told me you need 20 cups of coffee a day to survive…is that really the world you want for yourself? People are more willing to reckon with that, to say, that’s not normal. Maybe the story that we've been fed that we are immortal and we should do everything, and that we are only as good as the monetary value we create for capitalism–maybe that's not actually true.

Learn more from Russell here!

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