Tag: Medical

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Chronic Disease Emotional Work

Day 186 and Broken

I’m coming up on my two year diagnosis of ankylosing spondylitis. I’ve had two years of feeling broken as I waded though the long haul from being bedridden to now being reasonably healthy. But I’ve yet to let go of the feeling that I’m broken.

Being a productive worker has been a part of my identity for my entire work life. To experience two years of not contributing financially to anything nearly broke me. What value did I have? How could I ever recover?

But I’m not broken. I’ve got more limits on my time as I just focus on health and wellness to avoid a repeat of my medical leave. But I doubt most people would know or care. I’ve been doing some of the best work of my life recently. So why does this feeling of brokenness persist?

Some of it is tied to me making some mistakes as I transition back to workout full time. I feel I owe people my time and work as I let them down. I feel I have a debt to pay off (not a literal one but more emotional for having stuck with me when I wasn’t useful). So I’ve been tolerating some people and work that I should probably let go. It takes as much energy to work on small potatoes and worry oneself about as it, as it does to aim for the big projects and goals.

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Chronic Disease

Day 183 and Pain

I forget the contours of pain when I’m not in its grip. Such is it’s overwhelming power that pain is the only thing you can focus on when you are in it, but it melts away from your consciousness like snow on a sunny day the moment it dissipates. Pain is both all encompassing and a ghost on whom it is impossible to keep a grasp.

It’s not an original thought I have here that pain is challenging to articulate. Virginia Woolf wrote On Being Ill

but let a sufferer try to describe a pain in his head to his doctor and language at once runs dry

I have an intellectual grasp on what is happening in my body. I can tell you what is happening in great detail. I take an immunosuppressant twice a month to keep the swelling in my upper thoracic spine down. These drugs makes me a bit more prone to infections as we need my immune system to be suppressed to prevent spinal swelling.

But when an infection takes hold my immune system fights back, the swelling in my spine comes back and the pain resurfaces. The pain will sneak up on me despite me being armed with all the knowledge about this cycle. It is still a surprise even knowing it is coming.

Yesterday I went to a doctor and got antibiotics. I came home and got into bed. And I got stuck. I couldn’t figure out what was happening to me. I’d been reduced to a consciousness unable to communicate with the outside word. I couldn’t even communicate to myself what steps needed to be taken next.

Whatever pain achieves, it achieves in part through its unsharability, and it ensures this unsharability through its resistance to language […] Physical pain does not simply resist language but actively destroys it, bringing about an immediate reversion to a state anterior to language, to the sounds and cries a human being makes before language is learned.

The Body in Pain: The Making and Unmaking of the World, Elaine Scarry

I go from having full intellectual capacity to understand my situation and discuss it with others to being stripped of language within hours. I couldn’t even tell myself what needed to happen next. I was stuck in bed. I tried to watch television but couldn’t focus. I tried to play mobile games and couldn’t focus. I was slipping into pain’s grip. It was only a reminder from someone who loves me that I had been lost from this plane of consciousness. “You are in pain Julie.”

I am resistant to taking pain medications. But it’s less about fear of their addictive power or potency. I am resistant to needing their help. When I’m not in pain I have the capacity to “tough it out.” I am able to hold onto the idea that my mind has some agency over my body. But as pain takes over my senses, I lose my agency and willpower. Pain steals the broader parameters of your personhood. I resist taking pain medications because I do not belief it is possible for me to leave my personhood so completely that I need their help.

But I do need their help. My focus narrows to the pinpoint of pain as it’s intensity blooms. And I don’t even notice it happening. I go from independent human to small body gripped in suffering without any awareness of how it happened.

Any other locus of power or human capacity that I normally retain shrinks to fit around the intensity of the pain. I am not even able to seek relief. That would suggest I retain the critical thinking to recognize what my physicians have prescribed I take and the capacity to enact it. I need to be reminded to take a Tramadol. I need to be coaxed into an OxyContin.

And then relief slowly slips over my mind and body. We think of opioids as drugs that shrink your eyes to pinpricks but I experience their relief more like a dilation of the soul. As the constrictive point of all encompassing focus that is pain is relieved my entire world opens back up.

I regain my mind, my willpower, my focus, and feeling in my limbs. That’s something they don’t tell you about pain. When you are in it you won’t feel anything else. The pleasure of a stretch or the relief of a leisurely walk don’t exist in the same reality as pain. You go from having thousands of senses to just one. You only sense pain.

If this all sounds unfamiliar to you I pray that it stays that way. But if it comes to pass that you are gripped by this monster know that it is ok to relieve your pain. There is no morality to this ghost that takes over your entire world. The only moral good that comes from it will be created by you. Pain will overcome you. You become stuck in it. And sometimes it is within your power to break free.

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Biohacking Chronic Disease

Day 162 and Reactivity

I’m sensitive to everything. Physically I mean. I’m surprisingly tolerant of emotional volatility, which means I’m well suited to entrepreneurial nonsense and financial chaos. Physically, on the other hand, I’m a hot house flower. Orchids have a wider band of tolerance than I do. If you don’t feed, water and rest me on a precise schedule I will cascade from blooming to dead in a few hours. Only a slight exaggeration.

I’ve got endless examples I can share. I can go from zero strain & a low heart rate when working out at 65 degrees to vascular distress and heart rate spikes at 75 degrees. When I was younger I would get drunk from one drink and now I can’t even have a sip of wine without turning beat red. If a drug has rare side effects I’m virtually guaranteed to get it. My doctors are pretty familiar with this now and like to make jokes about it. “Well .001 of patients experience thinning hair so you will probably go bald!”

On a day to day basis I hate this because it means I have a lot less flexibility to fuck around. I will find out. I need to keep strong rhythms and routines. And I can often spot when even a planned and positive therapy has negative consequences almost immediately.

For instance, I take an immune suppressing biologic every two weeks to keep my immune system from getting too worked up and causing inflammation. I’ve got ankylosing spondylitis which means the swelling shows up in my spine. It’s good to keep this suppressed. This drug lets me walk and live normally which is awesome! Yay! But on the day of my shot and about 24 hours after I feel like shit. I can literally feel my immune system getting shut down in real time. I’m sniffly, tired and slow today. While this is good in the long run, we want to keep my immune system down, I’m grumpy as fuck that I feel the effects of this drug.

The upside to this reactivity is even modest changes show up in my tracking tools. I can leverage many subtle therapies, diagnostics, treatments and supplements to significant effect. It’s probably a factor in my affection for biohacking. I can see results quickly. The feedback loops tend to be short and noticeable for me, which thanks to tracking many variables over a long time span, means I can isolate effects within relatively short order. So while I’m a pain in the ass patient I’m also a pretty emotionally satisfying one. If you make a correct diagnosis on me you will find out pretty fast. That’s so satisfying.

The irony of this short feedback loop reactivity is that I mostly work on longer term horizons and on extremely volatile things. Maybe it’s because I get the benefits of compounding because I have built up so many positive habits? I don’t get worked up by any individual data point because I’m used to seeing extreme reactions in myself. No big deal. I don’t mind chaos at all because I don’t have much chaos in my daily life because I’m constantly managing my own biology. Maybe I’m actually perfectly suited for my professional life now!

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Chronic Disease

Day 156 and Social Accommodations

One-on-one synchronous communication requires energy and commitment. If you have plenty of energy and few health problems maybe this isn’t intuitively obvious to you why it’s tiring for me. To understand I highly recommend the Spoonie theory of living with chronic disease. A Lupus patient Christine Miserando explains to a friend using “spoons” as a prop/metaphor.

So, she laid out a handful of spoons on the table and explained that the spoons symbolize all of a patient’s daily energy reserves. Every activity, no matter how thoughtless and automatic, depletes from the energy supply. Getting out of bed, showering, getting dressed, eating, and any number of mundane tasks threaten to deplete energy at any given time. When you run out of spoons, you can choose to borrow against the spoons of a future date, but there are consequences. When you deplete your spoons, you are bedridden. Unable to manage the simple activities of life.

I work with a limited set of “spoons” each day. If I manage my energy budget well you would never guess I’m any different than you. But I optimize my day around accommodating my firm energy budget realities. I think of it as a wheelchair or a crutch. It’s a tool that helps me extend my capacity. I can do more with less energy and thus I need fewer spoons.

One area that makes a huge difference is digital asynchronous communication. Written documents or presentations, text messages, email, Slacks, heck even voice memos are all great ways to reach me as long as you don’t expect an immediate response. Asynchronous communication means respond when I have the energy. I rarely feel overwhelmed by those as there isn’t a need to respond right that moment. I don’t have to use a spoon to get you a response. If you need FaceTime or a phone conversation then I have to work around your preferences (which might not be strictly necessary for the information it’s just what you happen to link) and then you are also asking me to prioritize your preferences over my limited energy banks. Which can feel disrespectful if you don’t suffer from strict energy budgets. You are asking me to take a double hit. Accommodating me makes me more likely to budget more energy and time on you in the future if you respect my energy now.

This means you may need to reach out more. If you expect a synchronous back and forth you may end up waiting on me. Please don’t wait on me to reach out and have energy & free time at the same time as you. You will wait a long time! Reach out and we will work it out asynchronous style.

This is why I love social media. It is easy way to connect people to what I am doing on my own tike frame I have extremely limited energy and capacity to express that one on one. If I had to I’d end up limiting my entire world to like 3 people. My energy for one to one communication is limited. As someone who is disabled and chronically ill, I feel lucky that I have access to technology that allows me to expand my capacity to connect and communicate. If I didn’t have these tools my world would be severely limited as each conversation and interaction I have takes significant resources.


Like a myriad of writers who have been sick before me (Walker Percy, Virginia Wolf to name a few) I use this tool to extend my life and influence beyond the bed in which I spend 12 hours a day. So please understand I cannot always communicate in real time or in person for everyone. It’s the highest energy usage thing I do. Let me use technology to expand my world beyond my bed. We will both get a lot more out of it and you will find that thanks to technology I can can as much done as you.

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Biohacking Chronic Disease

Day 138 and Positive Reinforcement

All my health apps think I’m dying. Which like no duh guys I’m an avid biohacker because I’ve got some health challenges. This is a persistent issue across most tracker apps but a compelling example is the Gyroscope app which relies on a health score system. Because I have a high resting heart rate due to chronic pain from ankylosing spondylitis I get served persistent alerts like the one below. “Warning you are more likely to get sick right now”

Of course, the issue is if you are always getting flashing red lights your inclination to do anything goes down. It’s the “boy who cried Wolf” problem. If I’m always being told I’m more likely to be sick now why would I ever modify my behavior to try and improve things? It’s always “now” so there is no point in doing anything to make a better future.

We see this problem across so many areas where our future selves would benefit from our present selves being more responsible, from personal finance to weight loss. If everything sucks now and nothing we do seems like it will improve the situation by a meaningful margin why bother?

App designers need to take note of this tendency of despair based on the gap between short behavior loops and long term goals. Nudging us towards improvements required positive reinforcement that rewards us for who we are now even as it seeks to compound the positive effects for significant change over time for a future outcome. If you’ve got 50lbs to lose you need to be rewarded for each small decision that helps you lose your unwanted weight, not be told everyday by an app that you are at risk of disease.

Overwhelming human minds with the enormity of a goal or a gap between our current stare and our long term goals doesn’t lead to positive short term behavior. If it did we would have solved climate change and racism by now. If we think a problem is within our power to solve we will try but fuck it why bother if it’s a parade of impossible scenarios.

If you are designing systems for people that need to make changes keep in mind this gap. You will see better results and happier humans if you lay off the doom and gloom. Positive reinforcement works.

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Chronic Disease Internet Culture

Day 121 and Health Data

One of the biggest blockers to taking up a more quantified approach to personal health is your ability to get good data. Why? It’s not because it’s hard to capture or track key metrics. Nope, one of the biggest blockers is the consistent portability of your personal health data. This frustrates me as biohacking has been key to regaining my health but it’s a challenge to keep my data sets in order.

No one uses one piece of hardware or software forever. Preferences evolve. Doctors want new metrics. A new device comes on the market. You decide one metric isn’t worth tracking anyone. Or maybe your Fitbit just shits the bed and you decide to buy a new type of step tracker. Whatever the reason our stack changes over time. And yet data interoperability seems like a pipe dream. Devices and applications act is if you will be with them forever. Your data gets parsed in their specific presentations with little indication that it can be exported for later use in another table or application.

If you are considering doing work in health data please take into consideration that even if you build the next billion dollars company with a decade of your leadership, it’s possible your customers will won’t make it for the whole ride. Please don’t tie them into your best case scenario. There are real people on the other end of your metrics and they are making important real world decisions with the health data that is making you money. Respect that we want you to make money for providing us with value but there may be a legitimate reason we need to make a change. We should have the ability to take our data and have it be usable somewhere else. So please don’t optimize for “sticky” user behavior that keeps us coming back. Give us value without having to sacrifice our freedom. If you can’t do that then maybe you shouldn’t be in the health business.

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Biohacking Chronic Disease Chronicle

Day 120 and Naps

I’ve always been prone to energy dips in the afternoon. I wake up immediately ready for the day but after lunch and another of work or activity and I’m heading off an energy cliff. If I allow myself a burst of sleep I’ll be back and feeling as energetic as I was in the morning right as my body insists on an energy dip as it is dinner time. Two hours later and it’s basically bedtime just as my second energy burst is coming on. Not great timing if I’m honest.

I used to force myself through afternoon lulls with caffeine or attempting to slot in a workout to push for energy. Neither really worked well for my rhythm or energy. Once I went on medical sabbatical I was able to test out the afternoon nap. The Mayo Clinic agrees it has proven benefits for cortisol levels and stress. WebMD has a long roundup of benefits like lowered blood pressure. The only thing you have to look out for is if you are an insomniac then late afternoon naps might push your bedtime back.

This is a concern for me as I regularly get too worked up to fall asleep easily. I practice all the sleep hygiene best-of hits like blue light blocking, dark cool rooms aand magnesium and still I find myself longing to find my phone and doomscroll Twitter. My biohacking efforts on the most restful night of sleep are easily derailed by the need to dunk tweet or reply guy.

I long to find the ideal balance of nighttime rest and day time napping to make my ideal circadian rhythm shine. I wonder if I should be one of those types that breaks their sleep pattern into two blocks. Biophasic or segmented sleep always seemed like a cool hack for maximizing energy. I just don’t know if it would accidentally break me.

As much as I want to go on some sort of sleep optimizing spree my gut tells me I just need the sleep that I need. I probably need the eight hours at night along with an hour during the day. It’s just fine that I sleep more. It’s literally the best thing anyone can do for their health.

The tricky workaholic part of my brain fantasizes about having an even block of productive work that shifts my bedtime so I have a six hour evening block to match my six hour morning block. I get indignant that after my nap in the afternoon instead of rising into a second workday my energy is consumed with practicality like dinner and sleep hygiene routines. I should not push my body for my workaholic fantasies but the bio hacker in me really wants to try.

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Chronic Disease Chronicle

Day 117 and Drained

I feel like my mind hasn’t caught up to my body this week. Usually it’s my body that isn’t caught up to my mind. But I’ve been fighting so hard to get physically healthy that I don’t think I fully considered what it would mean to achieve it.

I’m exhausted as the reality of a change is hitting me all at once. I’ve been having a roller coaster of emotions trying to figure out how I feel. Some of it is a resistance to change. But I think some of it is simply that even positive changes require emotional adjustments. Adjusting to a new self requires a lot of energy.

A part of me feels like I’m fighting some boss that if I can just defeat will let me get to the next level in the game of my life. And I’ve used up all lives trying to get through it. I’m pretty sure I’ve figured out how to make it happen but I’ve been at it for so long I can barely see straight. But who wants to take a break when you are so close to leveling up?

I really don’t have it in me to say much more today. But I’m pretty sure I’ll have more once I can just get through it.

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Chronic Disease Chronicle Startups

Day 114 and Resistance to Change

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?

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Chronic Disease Chronicle

Day 109 and Medical Outliers

Watching the frenzy around vaccines has been an emotional experience for me. A lot of people are making assumptions about the private medical decisions of others. I’ve been watching friends “believe science” and discuss bonding over their jabs. And I’ve been watching friends caution that perhaps we should keep an eye on the long term effects of novel therapies and weigh the costs. The most frustrating aspect has been that everyone assumes that I am on their side. That I’m normal enough to have an opinion that is based on political affiliations and not one informed by my status as a medical outlier.

I guarantee you that my feelings on medical procedures are more complex and nuanced than any zeitgeist narrative thanks to being a medical outlier. As I’ve watched worried well and vaccine skeptics look to bond with me (especially those concerned about side effects or long term impacts) I find myself frustrated. It’s not that likely your concerns are mine. The chances that you as a healthy person with maybe a few issues are also a medical outlier in the way I am is unlikely. Like trust me you’d know it. You’d know if you were actually unusual. It doesn’t fucking sneak up on you.

I’m literally outlier. By definition I’m at the fringes. It’s not a surprise when shit goes wrong as weird medical shit tends to let you know. It’s not a vague concern about something that might happen. I’ve got blood work and specialists. I watch my markers like a hawk to see how much we much we push my immune system quarter by quarter.

I want to discuss my decisions for my own safety and what I’ll be doing but it just doesn’t seem, well ironically, safe. Too many people are too polarized and frankly paranoid. Most of you don’t have to worry about the stuff I worry about. It’s just not that likely you are going to experience the kind of autoimmune system cascades that are a real risk for someone like me. It’s a one in a million kind of thing. So equally it’s possible what is very safe for those millions is a risk for me. I wish it weren’t.

So I would ask folks to please take some care with privacy and respect when discussing medical conditions with anyone. Especially if you know they have something complex or long term. Other people’s assumptions about what I can or cannot do makes me feel alone and sad. Don’t let your politics or your fears invade the space of others who may not be so lucky as to have the same choices and opportunities. I promise we really appreciate the empathy and kindness.