“how doctors think” about eczema

assorted doctors tools
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A few weeks ago I finished a book called How Doctors Think by Jerome Groopman and oh boy do I have thoughts. First off I have to say that the book had its fair share of  downer moments because it had a lot of cases of patients with cancer who struggled with doctors to find plans of care that extend their life just a bit more.

But other than that it was full of all kinds of information about different schools of thought that doctors employ to help their patients. Two specific ones it mentioned included the evidence-based and algorithm-based approaches.

With the evidence-based approach, the doctor relies on existing research, especially those that have a large amount of studies behind them. The issue with this approach is that doctors often default to using said heavily-backed solutions without inquiring or considering less numerously-backed ideas. This could become a problem, say if a new drug has tens of studies done on it, all sponsored and paid for by the company that produces the drug, while an alternative medicine or treatment may have great results but only a handful of studies supporting it, In that scenario, it’s almost more of a research field monopoly,  rather that robust results that gives the drug the good reputation, causing the doctors to favorite it more. In relation to eczema, where these ideas can be applied is in understanding how to approach doctors in a way that doesn’t cause them to default to automatically prescribe topical steroids (the long standing, most heavily-researched atopic dermatitis prescription option) as the first line of action.

With the algorithm-style approach, the doctor can follow a flowchart style of logic that’s been proven relatively effective over time. Its basically like having a graph that has arrows from each option to a few subsequent options, like:

“Does the patient have X cluster of symptoms?

  • Yes = Prescribe drug A.
  • No = Run test 1.

Is test 1 positive?

  • Yes = Give drug B.
  • No = Run test 2.”

And so on, and so forth. The flaw with this approach is that it doesn’t allow the doctor to think outside the box, which Groopman argues can result in said doctor trying to fit a patient nicely into an existing “flowchart” result, even if there are some signs or symptoms that don’t quite match up with that diagnosis. This may be the case when someone has other co-morbidities too or when someone has common symptoms of two very different diseases (like this example of a woman who was using topical steroids and found out she had lymphoma). For this problem it can be useful to ask the doctor what are the best and worst case scenarios of diseases that fit the presentation of symptoms. Asking this can help a doctor think beyond their initial conclusion and more thoroughly work to rule-out other options.

Another significant point the author makes is that for doctors to really become better, they must remember their mistakes and use that vulnerability to inform their care. He gives examples of renowned doctors who literally have binderfuls of their mistakes that they reference to maintain humbleness and act as a forcing function to always push themselves to improve. This might be a more difficult conversation to have with your doctor as I imagine no doctor enjoys being asked, “so let’s talk about all the times you royally effed up with patients”.

One last subject the book addresses that I’ll bring up is the pressure doctors implicitly face when they accept any form of samples or gifts from big pharma companies. It’s not that all pharma-marketed medicines are bad, but that you want your doctors’ reasons for choosing a specific product to come from no other influence than that they believe it works and have seen that said products have good efficacy. This is why it can be hard to decide whether or not to use samples a doctor gives you as you don’t know that they really think it works or if they just happen to have them around from a sales pitch. A question to ask in this case might be “have you seen a lot of positive outcomes from use of X product?” Another way to foray into this territory with a doctor is to ask about long-term results, as well as what are any known side effects (this could apply to eczema-related products like topical steroids to non-steroidal creams or biologics or brand-name moisturizers). If something sounds too good to be true, it’s probably fairly new to the market and so the longevity of effects haven’t been tested. A further question to ask is if there are any cheaper off-brand equivalents because those usually only come out after something has been on the market for a while.

These are just a few of the points that the book made, that I’ve tried to connect back to how to talk with your dermatologist about eczema. There are more factors involved that could make the process more convoluted or impossible in some instances, but I do think these provide a light foundation to attempt to build a stronger relationship with the right doctor.

Speaking of the right doctor, I have an older post that goes more into making sure you feel comfortable and that you have a good rapport with your doctor, which was another huge point Groopman made in the book. He explained that a patient who is difficult to treat, simply by having complex issues that don’t respond to more common treatments, often ends up being resented by the doctors, and as a result gets worser care. The suggestions in the book for overcoming these kinds of doctor-patient relationship issues is to say something like, “I know my condition is difficult” or “I feel like we got off to the wrong start” to help try to make the doctor aware of their negative emotional bias.

On the flip side, a patient that the doctor likes too much may also get worse care if the doctor makes overly sympathetic emotion-based decisions like skipping tests to not inconvenience the patient or by avoiding procedures that may cause the patient pain, etc. To overcome this issue, it can be as simple as saying “please treat me like you would a patient you knew nothing about”, and hopefully that should provoke the doctor into making sure they’re as analytical and diagnostic as possible again.

I’d love to hear about any particular experiences you’ve had with your dermatologists in the comments, and whether or not you agree with my suggestions, and also from any doctors out there reading this.

“have you tried…?” survival guide

Yesterday was my 27th birthday. Yes, I know it’s not my eleventy-first birthday or anything, but I am going to impart my own bit of wisdom from my meager years of life. Also from November 1st through New Years is Tolkien season for Jake and I, so expect a lot of references.

In these 27 years I have often heard the question “have you tried…?” in regards to moisturizers and supplements and all manner of things that one might think could help me with my eczema. While all good-intended, I think there needs to be a narrowing of the question so that it is focused, and therefore more easily answered.

What I mean by that is, when someone asks, for example: “hey, I noticed your skin; have you tried using coconut oil on it?”, a potential answer on my (or any eczema-living human’s) end could be “have I used coconut oil for what purpose?”

That first clarification requires the questioner to expound upon their thoughts. Are they asking because my skin is dry? Because it’s red? Because it’s itchy? Because they think they have an idea to balance out my skin microbiome and kill potential S. aureus overgrowths? It lets the question receiver have a context to delve into to make the initial question into a conversation.

One misconception about eczema is that it’s just dry skin. If it was just dry skin, yes, using virtually any (nonalcohol-based) product probably would help alleviate the problem. However, eczema is more than its visible crocodilian facsimile. It is an autoimmune disorder, meaning there’s a underlying cause for the external appearance, and so though you can help the condition by addressing the skin issues, the idea of there being a blanket  solution in the form of a single moisturizer ends up feeling a bit naive and potentially frustrating.

So a gentler way to education about the various aspects of living with eczema is to require the questioner to be more concise. If they are thinking “oh your skin is so dry… you should try (insert moisturizer here) to help” then we can get somewhere because we can be like “yes that may help the dryness but I also suffer from other symptoms of eczema like skin sensitivity, and so I can’t use (insert moisturizer here) because my skin reacts poorly to (insert an ingredient)” or answers of that nature.

If someone asks if you’ve tried a product because of your skin’s redness/inflammation, you can respond in kind with “no, I haven’t. How does this product reduce inflammation?” and learn something new. Or you might have the opportunity to respond with “no, I haven’t tried it but I’m working on reducing inflammation via diet right now, eliminating sugar and whatnot and reducing stress”.

In a nutshell, if we can get the questioner to be more precise with why they are recommending the moisturizer (or whatever product type) for, then we have a chance to have a deeper conversation about what we’ve tried and our logic for why we tried it, and also increase everyone’s health literacy, including our own. And you know me and my love of increasing health literacy. 

So speaking of health literacy, here’s a list of common eczema symptoms that can be inserted into the question receiver’s responses to help figure out what the questioner is trying to address:

  • dry skin
  • flaky skin/peeling
  • redness (rashes)
  • inflammation
  • skin heating/flushing
  • itch (of course)
  • fissures/skin cracking
  • wrinkles
  • bumps/acne (often due to scratching)
  • excessive palmar lines (a fortune-teller’s nightmare) indicating a lack of filaggrin protein
  • sores
  • weeping (usually from the open sores)
  • insomnia
  • infection risk (again from scratching, but also just from having a compromised skin barrier)

And with that short post out of my head, I’m now off to enjoy my birthday week (as I spent the actual birthday day driving in the car 8ish hours to visit my parents).

Catch me off blasting my parent’s retro speakers and dancing around the house like:

And/or probably heading out to enjoy yet another of the Harry Potter world movies, Fantastic Beasts: The Crimes of Grindelwald. Can I just say how much I love that they come out around my birthday time, and have been since I was in second grade?

I’ll be the one sitting in the theater all giddy like:

how to live your fullest life with eczema

woman stands on mountain over field under cloudy sky at sunrise
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Two days ago I was working on a post where I mentioned a book I was reading (The Little Book of Skin Care: Korean Beauty Secrets for Healthy, Glowing Skin by Charlotte Cho) and how it explained that Koreans have a different mentality about their skin. Their attitude is that skin care regiments are to be enjoyed, rather than thought of as a chore. My thoughts were that it would be amazing if there was a way to cultivate such an attitude into the lives of those with eczema, to get us to see managing our skin not as a burden, but as something we could learn to embrace and therefore lovingly treat ourselves during our routines. My hope is that the better the attitude we can have about the inevitable (having to put in a lot of time to manage our skin), the better we can mentally feel about living with eczema. Speaking of living with eczema…

I watched a webinar from the National Eczema Association that same night called Unhide Eczema: Storytelling for Healing. It features 3 speakers, including Ashley Lora, Alexis Smith, and Mercedes Matz who each went into detail about their experiences with eczema and how they found community through opening up about their individual journeys living with eczema.

The major takeaways from the webinar were:

  • show the world your skin. Don’t hide away and fear the general public’s response but rather embrace your skin and “unhide eczema”,
  • change how you talk about yourself and eczema. Don’t say you are suffering from eczema, but rather say you are living with it. The power of words is remarkable, and having an empowered attitude or at least one of acceptance is so important, especially as it is a part of you. So change the way you talk and change the way you think about yourself and eczema, and
  • speaking of empowering, empower yourself and others by sharing your story. You’d be surprised by how many people have eczema and need to know they aren’t alone.  The power of telling your story might even help you heal!

The idea of empowering oneself when you have eczema and sharing your stories brought me back to an article I had recently stumbled upon about a woman who cured her eczema through faith. Specifically, it was this woman’s power of belief that drew me. I think it can be so hard to find a way to keep believing you will heal when you’re stuck in the midst of a bad flare, and that is when it becomes essential to find your voice and talk about what you’re going through. Whether this is sharing a story about being miraculously cured, or of just finding a product that made you feel just a tad better, the ability to speak up and open up abour your experience is such a powerful tool. For one you are giving yourself a voice, regardless if it’s driven by frustration or elation.

You’re also you’re giving yourself a chance to build community (which I’m sure by now you know I’m obsessed with, but for good reason). Community is so important in this day and age because not only can you pass down the wisdom of the products you’ve tried, but you can continue to reinforce that you are not alone. I can’t state the value of this enough.

Just imagine you are in a public place (let’s say a movie theater) and you start to scratch an itch on your neck and you are feeling self conscious because you didn’t cover up your eczema with clothing layers today, but instead of sinking into your seat or averting your eyes, when you notice the person sitting next to you watching you scratch, you speaking speak up (before the lights have dimmed and the previews have started of course). And said person is like, “Wait, you have eczema too?! Omg have you tried x? And did you hear about the meet-up to visit the new eczema clothing company? Free samples! Oh and have you joined the eczema walking and group? Heard about the fair? Tried the eczema yoga morning classes?” And then someone else overhears your conversation and they chip in, and then another, and then before you know it you’ve made all these new connections and been inspired by all these new ideas on how to augment your own care and all it took was not worrying about hiding your flared-up neck, and being willing to chat. On a side note, apparently the NEA’s annual Eczema Expo is a lot like that dialogue interaction (I hope I can go this year!!).

My point is you have to be brave and take a chance. If nothing else comes of it, at least you are increasing awareness, and that alone helps trickle into better attention by the powers that be, which can lead to policies changes, shape doctors’ standard protocols, cause businesses to make new product lines, etc. Plus you spoke up and expressed yourself, which is huge. It is so important to not feel like you have to hide the part of you that is as impactful and long acting as eczema.

I’m totally with the #unhideeczema movement because it can be so damaging to have to modify everyday life habits to take care of your skin that the last thing you want to do is hide away, not to help heal, but because you feel ashamed. There is no reason to be ashamed. Over 31 million people in the U.S. alone have eczema. You are not alone.

And so that is why I think it’s so important to take these chances, speak up, show some skin! Because this is your life, and yeah you may be living with eczema, but don’t let that stop you from living!

And here’s a recent picture of me living it up with Fi in our comfy autumnal pajama apparel.

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One last thing, if you don’t know where to start telling your story, get some ideas from the National Eczema Association. The organization goes into more detail about the mental benefits of writing your story in a recent post here.

can you have a career with eczema?

architect composition data demonstration
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Last week in my email I saw a post from NEA about a woman named Helen Piña who described what it’s like for her to have eczema with her job. I was intrigued, as eczema (specifically topical steroid withdrawal) has completely derailed my initial career plans, and because Helen is the first person I relate to whose flares got crazy in the early 20s. I can definitely relate to her about causing little clouds of skin snow to rain down when leaving a spot (ugh), as well as trying to figure out when to scratch but also staying mindful to not end up doing it randomly while working. My catch was that I worked as a physical therapy aide and so I had to do be in close quarters with patients, leading them through exercises and demonstrating activities, so I really didn’t feel comfortable having so a degree of skin issues around them. Physical therapy school was even more difficult in that regard because then I did have to physically manipulate patients (can you imagine trying to stretch someone’s hamstring and them seeing little skin flakes falling off of you?). Personally, I always felt incredibly self conscious about it as it also seems like a health risk. Needless to say, it did factor into my decision to leave that field. That being said, I find it extremely encouraging to hear about how people make it work, keep their careers, and find an new normalcy in their day-to-day.

Nowadays I have been inspired to find other lines of work to that fit my skin too. But more on that another day. Also there are many inspiration people that created careers from having eczema or having someone in their life who does. Take for example, Abby Lai (a holistic nutritionist and creator of Prime Physique Nutrition) or Karen Fischer (nutritionist and writer of The Eczema Detox and other books), and many others.

Speaking of day-to-day life. I signed up a while back to be on the mailing list for the National Eczema Association’s Ambassador program, which means that when the opportunity arises, I am wiling to go meet with various people involved in making policies around eczema to voice my own experiences in hopes of shaping the policies directly around patient input (if you’re interested, here’s the link to the NEA ambassador page). A few days ago an email came through asking for ambassadors who were interested in going to Chicago (with a stipend, food and lodging covered, and travel expenses covered up to a certain amount). I think it’s amazing that the NEA is acting so efficiently as a liaison between the people experiencing eczema and the people and organizations who are doing the research and making the policies that will affect the people with eczema. It feels like their liaisons will definitely create a more lasting impact on the treatment of this condition as it is hitting the nail on the head on more than one front (with the afflicted and with the policy makers). And also it’s awesome because when are you offered a chance to have basically an all-expense-paid trip to go and try and change the policies that impact your day to day life?