If you asked me my dominant emotion when I was younger I probably should have said anger. I was a fired up young woman. But as the years have gone by and the social benefits of seeming happy have piled up I’m finding it easier to spend more energy on smiling. This isn’t the same thing as being happy.
We like when people are friendly (even if we actually prefer they be kind) and I seem to have bought into it as a moral virtue over the years. I thought it was a gender thing but now I’m much more convinced it’s part of a family trauma cycle set in motion by my father who is exceptionally good at being liked. Cue Bojack Horseman joke.
You inherit your parents’ trauma but will ever fully understand it. Haha the cop is a cat.
Naturally I rebelled against perception of happiness and likability thing with a lot of anger as teenager. Cue lots of screaming stuff like “why do you care more if other people like you more than family” and you’ve got a pretty good idea of what I repeat to my therapist now as an adult.
And because intergenerational trauma and family systems work actually isn’t bullshit I’m starting to realize I stopped being angry and started smiling at some point not because I’m happy but because it’s a learned behavior from my childhood. And the smiling is papering over a lot.
What used to be passion, intensity and anger is fermenting into sadness over the years. Not because I’m actually sad inherently but because it makes me sad to lie about how I feel all the time. But I’m not entirely comfortable expressing any emotion. So now I smile when I’m sad. I’ve absolutely smiled when crying from sadness and grief.
Thankfully I hasn’t yet started laughing and smiling when I’m angry, but I fear if I don’t resolve this pattern and move on it might not be far off. I’ve still got significant work to actually feel my emotions in any given moment. Anger feels like it’s too reactive. Sadness like it’s a sublimation of something else. And if I actually am happy then I need to feel that. But I can’t force it with a smile.
I take up a lot of space. I spend time on social media because there is so much space you can literally be the President or a celebrity billionaire industrialist and there are still corners of the web you don’t penetrate. There is a lot of room for loudmouths, so much so that even someone like me still has plenty of room. I barely rate on the Elon Musk attention scale. Even when I’m screaming at best I crack into D-list zeitgeist. It’s like the privacy that comes with living in New York City. You can have some notoriety but the web doesn’t care. I like how you can feel alone.
The irony of course is that I think no one is paying attention to me. I think I’m an average Joe nobody that no one ever notices. This despite the fact that I am paid to be an expert in getting attention. No literally I cost a fortune (I’m worth every penny) but I’m somehow convinced I’m invisible personally. I can feel lost in a lonely world where I’m not even sure the people that love me the most can see me. I’m stuck in some lonely portion of my childhood where I felt abandoned so I’m replaying it out now as an adult. It’s not great but I get something from it.
Except this is a fantasy that is not true. I’m not that child anymore and I know how to get attention. I’m not alone. Even when I’m not consciously drawing energy to myself, people do see me. I can simply be myself and be seen. I command attention. It’s who I am.
You always think as a kid you will get some cool superpower like laser eyes or flying but nope you are going to get a super power like public relations or brand marketing. And honestly, when I’m not a self pitying victim I know those to be awesome super powers. You can make money and direct business and politics with those super powers. I just though I’d get something a little more aesthetic you know? It’s dope but also like adult superpowers are a letdown for your inner child.
I just need to remind adult me that I am seen. That even my normal personality not exerting her will force onto the universe is actually still quite visible. I can just exist and I’ll be holding space for myself. And it’s a good space with plenty of room for all of me. And still intimate enough to feel the love around me.
Crash landing my life into a medical sabbatical really fucked up my headspace. Around two years ago I was beginning to realize I didn’t have a choice in accepting that I was sick. My identity as an always on, gets things done, reliable, entrepreneur got replaced by an entirely new self conception as “ill person” in a matter of six months. In August of 2019 I disclosed that I was officially sick. I sold my company and was going on leave.
It wasn’t a pretty adjustment. And I’m probably lying to myself when I say it took months to accept. I hated the new me. I felt weak and out of control. Willpower and muscling through did very little to help an autoimmune disease. If anything that mentality of “working on the problem” made it worse as I needed to rest and let my doctors do the work. I was resistant to change.
I think I’m going through a similar transition now as I did in 2019. I began seeing a new doctor in Colorado in October of 2020 and I made more progress in six months than I did in the previous two years. I’m beginning to face a new identity change as it becomes clear that I won’t be “sick” forever. While autoimmune diseases aren’t like an infection, there is no “cured,” it is beginning to look like I will be healthy enough to live normally. You won’t be able to tell I’ve got anything wrong with me soon.
And I have to admit to myself it’s a mindfuck. The emotional and psychological work I had to do to accept losing my entire identity is happening all over again. Who the hell am I if I’m not sick?
You see for the past two years I got used to explaining to people I was a sick person. I was disabled. I needed accommodations. I couldn’t work in ways I felt I would be reliable. I came accept my identity as someone with physical limits. And I slowly figured out ways to communicate that new reality others who has previously seen me as this abled person.
I guess you could say I was at peace with my situation. The pandemic helped. I know it probably sucked for you but I really enjoyed having a year of my recovery coincide with others having to live the way I did. I know it’s selfish but it helped! I felt less alone.
And yet just as I’m finally feeling like I really got a handle on my new identity it’s not my reality anymore. I’m not going to be a sick person. And while I thought I’d be overjoyed it turns out it’s a little more complex emotionally.
Let’s try a comparison. Imagine you broke your arm. You keep it in a brace and you can’t use it while it’s healing. And then the cast comes off and you are unsure if you can go back to using your arm like you did. You used to move your arm without thinking. You don’t worry about applying pressuring or picking things up before the break. But after it’s scary. You don’t want to set yourself back. You are scared to lift things and scared to apply pressure. I am in that place with myself. I know that the break is healing. The cast is off. But the muscles are atrophied and I’m not sure I trust that everything is knit back together. But the reality is that soon I’ll have the all clear.
But who I am now? I’m not the entrepreneur I once was. That workaholic Julie won’t be coming back. But the disabled sick Julie won’t be with me forever either. And I’m a little scared about it what’s coming. Who am I going to be next?
I often find it easier to talk about the darker parts of my journey from chronic disease once I’m already through the worst of it. If you are hearing about my long dark night of the soul it’s probably because I can see dawn breaking.
Maybe it’s because it’s hard to discuss the challenges when you are in the thick of them. Having any amount of perspective when life is at its worst is a skill reserved for religious scholars and internet advice gurus. The rest of us just try for hindsight being 20-20 at best. I admire the stoic philosopher types but I’m generally just happy to be able to survive rough days with a minimum of pain and angst.
It’s likely this tension between a better current reality and the heaviness of past challenges that made me so confused by the reaction when I posted about the envy I felt towards people who live healthy normal lives. A number of people checked in on me worried or concerned about how I was doing. I didn’t get it. I had just been discussing how well I’d been doing so why was everyone offering to pray me me?
I’d come to terms with some of the sadness and anger I’d felt during the worst days of my illness because I was doing well. I’d been posting about how excited I was that I felt great, had clean bloodwork, and was seeing better days. It was because I was doing so well I decided it was best to ruminate on the challenges I’d experienced. I was on the other side of it. Feeling well and energized meant I had the capacity to explore the dark places. When I’m actually in a dark places usually all I can do is survive the experience.
But I get that others didn’t see that now. They saw darkness and sadness and reach out to me with kindness. The love and support from people close to me and the messages and prayers from my internet friends all added up to me feeling like the good times will just keep getting better. If you are reading this I encourage you to share your journey. You just might get back the same love that I got. People are great that way.
I didn’t have hobbies for a long time. People would ask me what I did in my free time and I’d give them a confused look and try to come up with a plausible activity like reading. I was embarrassed. Everyone else constantly doing shit. In reality, I didn’t have the energy for anything but work and taking care of life basics (and for a few years spare energy was dedicated to sex and dating but that’s different post).
I’ve been an on and off entrepreneur my whole working life. And if I’m totally candid I’ve had health issues that impacted my energy since I was a child. So while I have had things in my life other people would consider hobbies, they were slowly stripped from me. I stopped horseback riding somewhere between 16-17 when I dropped out of school. I told people it was allergies (which was true) but much of it was exhaustion. I was fighting just to keep up with obligations to education like taking tests for college and to prove I had learned enough to be considered a “graduate” by my school.
In college I was blessed to go to a school that wasn’t cool to have have parties. That made it easy to hide being too tired to socialize. Other students were in clubs. I didn’t join anything. I was thrilled to make it to my job (as a research assistant to a medical ethicist) and get home to my roommate and boyfriend to watch tv at night. I didn’t realize this wasn’t normal at the time.
Once I started my first company all I did was work. I had to socialize professionally so I spent a lot of time at fashion parties. While this is fun it wasn’t a hobby. I partied because it’s how I made my living. For a while I thought this meant I had a hip social life. Which was a nice lie. I had a glamorous job.
It started dawning on me around 24 or 25 after I sold my first company and had to relocate to San Francisco for the acquisition that other people didn’t live like I did. In San Francisco people hiked, did yoga, took classes, and all the other “bullshit” I looked down on. I looked down on hobbies not because I think work is better but as a defense mechanism. I was jealous.
All these people had energy at the end of the day. They wanted to do things! That was unfathomable to me. I could barely do work. How the fuck was I supposed to do stand up paddle boarding on the bay? I was not kind to people that had hobbies. I told myself (and they could tell) I thought they weren’t as good as me. Of course, now I realize this was the trauma of illness manifesting it. I couldn’t do what they did. Rather than feel sad or angry or some other productive feeling I decided I was better. All to avoid letting myself feel how angry I was that I couldn’t have that life.
I’ve come to accept that I still live more than most people even with limitations like illness. I don’t have to prove a good life with status markers like hobbies. Though I’m still fighting to get to complete functionality and control with my autoimmune disease. But even if I do get to a place where I can live normally I might still skip the hobbies. I’ll go straight for the pleasures like work. I’ve only got so much time so I may as well enjoy each moment with what I actually like.
I’m getting the sense that a lot more people suffer from general poor health than we let on. When I discuss my own struggles my inbox blows up with fellow suffers of autoimmune conditions. People are fatigued, in pain, mentally sluggish and often struggle with adjacent symptoms like chronic inflammation or gastrointestinal ailments.
Please know you are not alone. As it’s rarely considered socially acceptable to be sick (it’s own issue) I’m going to use my position of privilege to discuss how I’ve hacked my way from completely disabled to about 90% healthy. I’m here to share what luck, power, and wealth have given to me so others with less may succeed like I have.
Step 1: Diagnostic Baseline
It’s really hard to do anything when you are sick and trust me I hate being told well nothing is wrong so maybe just lose weight, exercise and eat healthy. Like sure you fuckers I haven’t considered yoga. Fuck all the way off. But alas it’s true that in order to navigate modern medicine you need a baseline. Go to a GP and ask for a full blood work up. A blood test is typically composed of three main tests: a complete blood count, a metabolic panel and a lipid panel. Read up on what you might see on a typical blood panel. This article is a good place to start (I am not a patient of theirs and do not endorse them for care it’s just a reference).
Step 2: Pick Your Tools and Measurements
If it is possible (lots of folks suffering from chronic fatigue can’t) start on the basics. Order a tracker like a Fitbit, Oura Ring, Apple Watch or Whoop. Then pick an app that can help organize your data. I personally use Gyroscope. My tracking stack is a Whoop for strain & recovery and an Apple Watch for more generalized tracking like sleep, sleep and heart rate monitor. I use MyFitnessPal for food tracking. Strong for workout tracking. Calm for mindfulness, and Gyroscope syncs it for one dashboard. I also use an app called Welltory which uses HRV & blood pressure from monitoring it does in application as well as through syncing with Apple Watch.
An iPhone application folder with wellness apps including Gyroscope, Welltory, LifeCycle, Apple Fitness, Calm, Whoop, Endel, MyFitnessPal & Apple Health.
I also track my symptoms in a journal app called Day One as it’s the lowest friction place I can do simple logging of metrics like pain, mood and energy levels. I also use Google Sheets to keep track of my medications and supplements as I take upwards of 25 different pills and remedies a day (trust me I wish it didn’t work). While there is a lot of variance on workouts I always get hour of low impact walking (3 miles a day), ten minutes of mindfulness, and all my supplements. Like I never miss a pill. I’m happy to discuss my supplement stack with folks but here is a basic guideline of what I take that is provably good.
Step 3: Steadily Improve
Most people overdo it. You try to change a bunch of stuff all at once. Or you dive right into a big change. This is too overwhelming. And it can make you feel sicker (some folks call it a healing crisis). Just pick one metric and improve it by 10% over a week. Pick one activity you will do for 30 straight days. I said I’d write every day and here it is day 91. (Edit, I updated my stack on this post to reflect current use on day 355). The point is you can’t improve everything all at once.
Part of my success is simply telling myself I was going to run the experiment even if it was a failure. Biohacking requires that you don’t change up your variables too often or too quickly. You need to establish trend lines. The biggest mistake you can make is being “noisy” as you will never isolate the meaningful variables. And you won’t stick to it. So it’s a double fuck up. Clean reliable data matters. Don’t change too much too fast.
Step 4: Try Common Experiments
You don’t need to reinvent the wheel. Coming up with unique experiments probably won’t be necessary till you are well along your biohacking journey. My elaborate tests didn’t really start till this year after two full years of tracking. Start with common experiments others have shown to work. Fasting is a great place to start for metabolic health and fat loss. Walking makes a big difference in your resting heart rate. Being active once an hour has proven metabolic benefits. Try intermittent fasts and then if you see a benefit you can progress to 72 hour water fasts. Adding more protein to your diet is popular for a reason. Start with 20 grams at a meal and work up to a gram per ounce of your goal body weight. Eating more protein tends to shift your diet away from lower quality calories as it’s hard to eat a whole chicken breast and then eat a bunch of fried potatoes. Though I have tried. Work in supplements for whatever your bloods showed you to be borderline on. Vitamin D deficiency is common. If want to sleep deeper try magnesium at night. If you are tired B vitamins are proven. If mental acuity is your goal CoQ10, green tea and ginseng work for many people. Metformin is the top metabolic drug for a reason. If your lipid panel said you needed to lose weight or you have metabolic syndrome Metformin is your first stop. Like I said, there are a lot of proven hacks you can test out and incorporate into your life right now. Don’t be intimidated just work an experiment that has a high probability of success.
Anyone can begin biohacking with a goal, basic tools, and some patience. I’ve taken myself pretty far in the past three years. I’ve had great doctors but some of my success comes down to being willing to experiment with my body.
The American attitude towards healthcare leans heavily towards pharmaceuticals. Much of what ails us might be mitigated by nutrition, supplements, exercise or physical treatments. But we tend to prioritize a “one and done” approach that lends itself to prescriptions for any ailment you can pinpoint. It’s not unusual to be on upwards of ten pills a day if you are chronically ill each one treating a distinct symptom. You mostly pray they don’t have any interactions and that the cure isn’t worse than the disease especially when it comes to drugs like opioids that can form dependencies.
I’m not entirely opposed to this approach if I’m being honest. A wholistic approach is a lot of work and when you are sick having the energy to do a bunch of shit is unrealistic. Even as I’m rounding the corner on controlling my autoimmune disease I still find it time consuming and often exhausting to manage all aspects of my health. The meal planning, the physical therapy, the body work, the exercise protocols, the sleep regimens, the supplement routines (mine easily costs upwards of $500 a month and no it’s not covered by insurance) and the nonstop recording and monitoring is practically a full time job. And you can’t even tell if it’s working half the time with crashes and system cascades that require heavy duty intervention. It’s hard to spot signal in the noise but that doesn’t mean it’s not there
Being sick in America feels surprisingly similar to being a startup founder. You get dismissed constantly. The workload rarely relents. And progress is only visible if you are diligent about monitoring core metrics that might reveal a trend line. It’s no wonder that entrepreneurs can be avid biohackers. We record and measure and monitor and hope that some higher authority (a physician or a venture capitalist) will spot the the key inflection point that may change our lives.
I have over 1,000 recorded data points just on my usage of pain medications and it’s correlation to my functionality. Despite my meticulous tracking and my adherence to protocols, I regularly have encounters with medical professionals that discount what I have to say. Like a founder I may be an expert on my “startup” but a physician or other expert has a lot more longitudinal data. The question ends up being do you as the operator (or the patient) have some insight the professionals do not? Honestly it’s hard to tell. Being wrong is pretty common. Doctors and venture capitalists know this. So do you as the patient or founder. Trust in these interactions can be low because of this.
Unlike with a company where you can walk away, being a patient means you are stuck with it. I have to work through the blocks as if I don’t I’m resigning myself to a life of illness. Which isn’t to say I can’t tolerate being ill and disabled, merely that I don’t believe that “this is as good as it gets.” I’m happy with my life but I do believe it’s within my control to do and be more.
For me this has meant juggling the pharmaceuticals that control symptoms but don’t heal me alongside an elaborate functional medicine and biohacking routine. I think of these drug for symptom regimens a cash flow business that can do well but will always remain the business that it is without a creative owner pushing for more.
I don’t want to just run my “business” even if it might be a self sustaining one. I’m at a point where yeah I can live like this for the rest of my life. But I want more than having a store or a service. So I test. And I experiment. And I throw tons of time after protocols and treatments that may be woo or bullshit. Or they may in fact be the turning point that lets me be more. And if it is then it’s all worth it. Much of what I’ve done has been worth it. But how the fuck do you determine that in a system that has so little interest beyond simple solutions like a pill? If I had the answer I’d tell you. Until I do I’m spending my time on machines that shoot electromagnetic pulses into my spine and glugging down micronutrient slurries. I hope the hacks turn into sustainable growth channels. But I could have just waisted a few hours on nothing. Until then I’ll record the data and hope the trend line reveals something.
I don’t know why I feel compelled to act on a doctor’s opinion (literally every doctor) when I can think critically about any other form of authority. I’ve got some kind of deep seated fear of disobeying a physician’s suggestions in a way I just don’t with others traditional authority figures and I wish I could break it. American doctors love to prescribe drugs for every random symptom or blood result. And I’m fearful to say no. Even though I know I can’t be on about half of what I’m given
Absolutely had a anxiety moment this morning as I’m due for a metabolic blood work up and I am not sure I have the energy for the shaming if I “fail” that my endocrinologist will throw at me. I’m a healthy weight but I was overweight earlier this year and I leave in fear of that fat shaming coming back. At this point I just let her prescribe the drugs and don’t take it all. I’m sure I’m in for a lecture about some thing.
I felt just terrific this morning. Woke up and had nary a dip all day as I went from work to chore with energy to spare. I often live in a bit of fear of the “bad” days when despite rest, nutrition, medications and supplements I feel like shit. It’s completely unpredictable which makes me feel like I live at the whim of a capricious god. Good days can feel equally bolt from the blue. I feel like I’m dying one day and the next I am hale and hearty.
Living life without much control is something all humans should probably make peace with, but I’m finding it especially crucial as I learn to live with a recovery from my health imploding two years ago. The trajectory of my health is one of continual improvement but scatterplot is jagged as hell as each day vacillates between health and pain. So while I can see that overall trend line is improvement I still get psyched out when the line takes a dip on a bad day. I am equally anxious about the good days as I seek to maximize every minute of feeling well by packing those days with to- dos. I always fear that the good day will never come again. And on the bad days I fear it will never pass. The one thing I can never seem to keep is that the data points themselves don’t matter it’s only the aggregate. And the aggregate says I’m getting better. But oh how the capricious health gods get me with their tricks every single time.
I’ve been working through unconscious mindset issues and self limiting belief systems as an active exercise the past few months.
I’ve been really hung up on the value of pain and discomfort. Somewhere along the line I became convinced that working hard is morally good. And over time that developed into an addiction to work. I got off on being seen as someone who never quits.
This workaholism eventually had the consequences of forcing me into quitting everything in order to survive my addiction. I didn’t have a choice at a certain point as it was stop being a workaholic or quite literally die. My health failed me so I could have a second chance. I’m still grateful that I chose life but not a day goes by where I don’t wonder if it was the wrong choice. What is living if I’m not killing myself?
Realizing that rock bottom was a choice was a bit of a shock to me. I always thought it was an external forcing mechanism that finally freed you from your addiction. I had a very Augustinian “make me good but oh not just yet” understanding of my addiction.
And because my addiction is considered virtuous I’ve had a lot harder time seeing the value of letting it go. We look down on drinking, drugs and other sins. Work isn’t on the list of seven deadly sins. Sure I get pleasure from working but I can’t separate it entirely from the external validation I got from being “good” especially from people I perceived as my betters. And because I had a challenging relationship with my father as a child (he is also a workaholic) this put me in a precarious position when dealing with older white men. In other words, anyone who will ever finance me or mentor me, as technology and finance has an extreme demographic skew. I was constantly in a place where I wanted validation from these elders to soothe my inner child. I would do anything to show them I was good and worthy. I’m sure there is a Biblical or Greek tragedy angle to a child so deeply committed to being sacrificed for their father.
All this was compounded by the feeling I got when people who were my peers put me on a pedestal. They wanted me to be a martyr as much as I wanted it. And some of them will likely never forgive me for not being their own personal Jesus.
This all leaves me with very mixed feelings as I know I hit my rock bottom and it’s time to leave behind my addiction. And it’s very much time to rid myself of enablers who pleasured and profited off my disease. But it’s so much a work in progress. I feel the desire to jump back in to work and say yes to everyone who wants my work. I love it and they want it. But I need to find a way to only ever commit to those who want me to be well and thriving.
Too many people profit off of the deep desire workaholics have to always be producing. Capital and eager teammates can easily see a workaholic as a better bet for making money. I’m sure most don’t realize it is predatory because they assume we can stop. The sad truth is I’m not sure I would have stopped. I just got lucky I became too sick to carry on. So this is me committing to only working with those who want me on their team if I’m healthy and “sober” because I’m not going back on the “bottle” ever again. I just hope it means my work will be better for it. I think it will but it’s one day at a time.
