Illustrating symptoms & their contexts

I’m taking an illustration night class right now at a local art center, and my goal was to spend some time using pictures to try to sort through and explain some new physical sensations I’ve been having over the past few months (actually, years.) I seem to have become very sensitive to certain smells and allergens, and it’s taken me a few years and a fair amount of self-tracking to understand that these smells/allergens are associated with this spacy/numb/can’t think feeling that I get sometimes.

What’s hard about all of this is that it’s invisible. I’ve had a hard time explaining to my husband, my co-workers, doctors, and friends what I’m feeling; I get the feeling that my story doesn’t always seem very believable. I wanted to write down some of these sensations to better communicate to them and any future doctors exactly what I’m feeling. Thus, a kind of rough draft of my attempt to illustrate this series of symptoms/feelings and, importantly, the contexts in which they occur:

01_tingly legs

02_relief

03_room

04_willy

05_floors

06_face

07_away

08_alone

Now what I haven’t gotten to is a nice illustration of how I feel so supported and loved by my husband, co-workers, and friends – that’s a huge piece of my story! I just haven’t figured out how to envision that yet.

As with any exercise of making the invisible visible, I did notice a new pattern emerge: the theme of ‘wood.’ I noticed I was drawing wood and talking about wood quite a bit. I suppose wood tends to get mildewy, and when it’s refinished that requires kind of harsh chemicals. So. This is reinforcing my desire to move to the high desert and live in a stone and ceramic household – and also wear organic, white, flowing cotton clothing. Oh yes, there is a desert hippie within.

Please share your thoughts about illustrating symptoms and their contexts – how could we help other patients do this? How does it help? What are the drawbacks?

Visualizing my daily self-management

What does my daily medication and self-management look like? How could I visualize this regimen? How can I communicate the ‘burden’ and work of caring for myself?

Those were my questions as I prepared to help facilitate a behavior design workshop at the Stanford Medicine X conference a few weeks ago. The day-long workshop was taught by Kyra Bobinet and conference organizer Larry Chu, and my role as a patient facilitator (along with co-patient-facilitator Dana Lewis) was to help bring the patient voice into the workshop and help attendees understand the context and complexity of patients’ days.

I decided to draw pictures of the things that I need to do on a daily basis; that way I could show the workshop attendees what my day was like instead of just telling them. Here’s the resulting ‘day’ that I presented during the workshop:

Morning meds, ~7 minutes:
On waking up, count out 16 pills (medications and supplements) from 9 different containers. Walk to the kitchen and squeeze 6 drops into my mouth. Heat up water, then measure out, stir up and drink my matcha tea (which has helped reduce inflammation.)

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Mid-day meds, ~1 minute:

Remember to take my mid-day pills to help with weakness. Grab my container from my purse, shake 2 out, pop ‘em down (with or without water.)

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4pm meds, ~1 minute:
Notice a reminder in my e-mail inbox to take my 4pm meds. Shake out 6 yellow supplements from one container; 2 pills from another container. Gobble down with a gulp of something cold.

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Nightly spreadsheet from hell, ~5 minutes:
Notice a reminder in my e-mail inbox to track my symptoms and a few behaviors for the day in my giant ‘spreadsheet from hell.’ I use this to keep track of what’s going on with me on a daily basis, because I tend to forget from day to day how I feel (curse of the eternal optimist.) (Note – a drawing of a spreadsheet from hell actually looks kind of cute. An actual spreadsheet from hell makes your eyeballs bleed.)

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Bedtime meds, ~5 minutes:
Count out 15 different medications and supplements from 7 containers. Gulp down all but 4 of them – put those 4 under my tongue and let ‘em dissolve.

2014-09-04 15.03.36

***

What did I learn through this exercise?

1. I could better see and understand my regimen and the impact it has on my day

I estimated that I have 19 minutes of medication dosing and self-tracking work each day, split up over 5 discrete moments on average. It was helpful to view my pills in color like this, instead of looking at the bottles – because that’s really what I see right before I swallow them. This type of drawing (or more likely, a color photo) would be a great help for a caregiver trying to help count out meds.

I’ve never documented my daily process like this before, so I never quantified the time it took out of my day or considered the way it might interfere with my daily activities. In the workshop, I stressed the point that most patients have daily, repetitive activities that they must keep up with and that drain their willpower and attention reserves. Asking a patient to add another behavior or activity to their daily regimen is asking a lot – especially for someone whose day is already fractured into tiny pieces.

2. I don’t have it so bad.

Sure, it was clear that my daily regimen divides my attention. But as my fellow patient facilitator Dana spoke about the hour-by-hour, minute-by-minute management and decision-making that a person with diabetes has to keep up with (something like 400 decisions per day,) I realized that my self-care regimen is a cake walk compared to hers. I can go on autopilot for a lot of it, which helps me save some brainpower for the important things (but which means I do make mistakes sometimes, so….)

3. It’s time to grow up and get a pill organizer

Today I ordered a pill container so that I can count out my am/pm meds on a weekly basis – I’m hoping this will help me reduce my own pill dispensing error. I can’t believe it took me 23 years to consider this, but pill organizers always seemed like they were ‘for old people’ (especially when I was 13 and newly diagnosed) and so I didn’t consider them before.

4. I left a lot out

After the workshop, I realized that there are a lot of things I do on a daily basis to care for myself that I didn’t include in this visual. Things like avoiding dairy and gluten (which definitely takes work,) exercising, getting enough sleep, taking baths to help me fall asleep and relax, and other such activities that many would put into more of a ‘lifestyle’ category. It’d be interesting to layer these into my day and see how that looks.

***

I’m always excited to test out new ways of visualizing my health situation, and I almost always get one or more useful nuggets of insight out of it. I’d recommend to anyone with a chronic condition that you spend a day or two documenting the activities that you do as a part of managing your day-to-day care; you might discover some opportunities for optimizing, as I did. I’d love to hear about it!

Picturing my health with a Vibrance Map

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Mini-Vibrance Map

Every time I sit down with my doctor, the first thing he does is ask me how I’m doing. He listens intently as I tell him about the things in my life that I think he might find significant – changes in symptoms, medications; you know, medical stuff. He always says ‘what else?’ and waits patiently until I’m done with my verbal report.

He is by far the best neurologist I’ve had, and he knows my medical self very well. But I think he has very little idea of what my non-medical self is really like. When I enter his office I am acutely aware of our limited time, so I don’t embellish my story with many extraneous facts about work, travel, recreation, friends, or family. I want to use our time wisely, and I don’t want to annoy him. Thus I present my medical self to him, a collection of physical sensations and historical medical events, supplements and bloodwork, surgery and tests. It works pretty well, and we have a good bond, but it feels like something is missing. I’m much more than my medical self, and my health depends on much more than medical interventions.

Recently I’ve been trying to think in a little more holistic way about my health, as I’ve noticed that things like ‘having satisfying work’ and ‘getting outdoors more often’ have seemed to help me physically feel better. I’ve been wanting to map out some of the lifestyle factors that seem to make me feel better, so I’ve started with this diagram of some of the people and things that support me and contribute to my life balance; if any areas are deficient, my mental and physical health will likewise become deficient.

vibrance_map

Full-size vibrance map

It’s an incomplete list of people and things that make me happy and joyful, that make me feel alive and vibrant, and that are my daily support. It would be great if I could share an at-a-glance view of my vibrance map, so that my doctors could quickly see if I was deficient in any important way.

How could such a map be created? My phone knows where I’ve been, who I’ve been spending time with, and it contains photo evidence of many parts of my life. My phone’s apps even know the identity of many of the people featured in the photos. It’s not a huge leap to think that we’ll soon be able to automatically generate a diagram to express how we’re doing with any certain facet of our lives.

Regarding oversharing: I consider my care team my confidants and partners, and I would actually enjoy giving them this quick view into what my non-medical-self is really like. ‘Quick view’ being the key phrase, as I’d never want to burden them with too much information.

This is certainly inspired in part by Lana Voynova‘s exploration into her instagram photos as they relate to her state of health. I’m curious what other visual health representations you’ve come across and would love to hear!

Recruiting patients for healthcare design research: why and how to do it

Recruiting people for design research can be a beast. Anyone will tell you. It’s always a challenge to make sure you’re getting people in the right demographic, with the right level of technological comfort, who have the specific behavior or mindset you’re searching for – and who happen to be available during the time you’re hoping to meet with them. Lately I’ve been hearing some folks at healthcare start-ups say they don’t speak with patients or include them during their design process - because they don’t know how or where to find patients.

I’d like to break this down. If you’re involved in creating any product for which patients are a stakeholder, here’s 1) why you need to include patients in your process, 2) what you risk by not including patients, 3) some creative ways to recruit patients, and 4) an important public service announcement about paying patients for their time.

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Why you need to include patients in your process

As a ‘User Experience Designer,’ it’s my job to make sure I have a full understanding of my end users and their context. That’s true for any designer, anywhere – from the industrial designer creating bic pens (can you imagine? who is this person?) to the fashion designer creating a sassy pant suit, to someone creating a mobile app for diabetics. We designers need a good understanding of our users before we start designing, and we need to get continuous feedback throughout the design process to make sure the design direction meets users’ expectations and solves real problems. It’s part of our process; it’s how we make things that people like and want to use. My research most often involves interviewing people, observing them in their environment, and creating product prototypes for them to interact with and react to.

I’ve worked pretty much exclusively in healthcare for the past couple of years, and I have found researching with and designing for patients an especially rewarding and emotional experience. Patients are always up-ending my assumptions about how they manage their condition, what their days are like, and how they’re feeling. Their stories are often private, sometimes painful, and sometimes hard to hear. I feel honored with their stories and perspective. While I always find ways to communicate design findings to my team, I also carry their words and emotions inside me, in my heart, throughout the course of the project and even into subsequent work.

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Without fail, the insights that we gain from patient research have prompted my teams to make vital changes – to the core product concept, to language and terminology, or to the look and feel of the product.

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What you risk by not including patients

If you intend for patients to use your product in ANY way, you need to include them in your design process. If your intended user will interact with patients during the course of using your product (think provider or office staff), you need to include patients in your design process. If you do not have a full understanding of your patient users or stakeholders, you risk building the wrong product, putting emphasis on the wrong features, and generally creating a sub-par product that no one will want to use.

Question: What if I don’t have time or money to include patients in my product development process?

Answer: if you have time and budget to create your product, you surely have time to make sure you’re building the right thing. Researching with users can be a ‘fast and light’ process – it can be as lightweight or in-depth as you want to make it.

Question: What if patients are my intended end users, but they aren’t my target ‘client’ or aren’t otherwise paying for my product? Why should I spend the energy to understand their perspective?

Answer: If you sell a product intended for patients, and patients don’t want to use it because it isn’t well-designed for them, your client won’t like you and they’ll find someone with a better product. A shame spiral will ensue. You will end up living in a van…down by the river.

van_down_by_the_river

If you don’t include patients in the design of your healthcare product, you will end up living in a van down by the river

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Some creative ways to recruit patients

Now that we are on the same page about the importance of involving patients in design, let’s talk about how you can find them. Before you start looking, though, you’ll want to make sure you know which kinds of patients you need to talk with; outline the characteristics you’re looking for, and create a screener (i.e., a list of questions that you can ask prospective participants to make sure you’re getting the right breakdown of folks.) That said, here are some ideas for finding patients:

1. Post flyers at healthcare clinics and institutions

flyer_for_patients

I have done this with some surprising success. I created flyers last year for a research project I was doing; I was looking for Android users with diabetes who were willing to speak with me for 30 minutes in exchange for a gift card. I distributed the flyers at a diabetes clinic, after calling and getting support from a nurse who worked there; over the next few months, I got at least 12 responses from it. You will always need to get permission before putting up these kinds of flyers, or else they’ll be taken right down. Big hospitals usually have lots of rules about this kind of thing. Smaller clinics might be easier. I gained an especially awesome ally through flyering: I connected with a person who I call the ‘Don’ of the local diabetes mafia – a very productive contact who passed my name along to her underground diabetes community and got me a number of interview subjects. See also, ‘influencers,’ point #2.

2. Find the ‘influencers’

influencers_

This one is exciting. If you can connect with a key patient leader, one that the rest of the community looks up to, a whole world of patients can be opened up to you. This happened with me and the diabetes mafia – once I met the Don of the mafia, I was flush with participants for my project. It was amazing. Places to find influencers: twitter, patient blogs, patient communities. Look for patients who are speaking out openly about their condition, perhaps at conferences or events. Get creative and find them however you can.

3. Show up at support groups

support group

This sounds a little creepy, but when handled with finesse and discretion this can be a good way to get potential participants. If you decide to try reaching out to people via a support group, I recommend that you contact the support group leader as your first step. Explain what you are doing and who you are working with, tell them that you are trying to help create a better healthcare experience for patients who have [x condition], explain that you are paying patients for their time, and ask if it is ok if you come to the beginning of a meeting to give a quick overview and pass out flyers. They may say yes – if so, that is great. If they say no, ask if they would be willing to circulate your flyer among group members.

If and when you go: show up a little early and try to chat 1-on-1 with a few people before the start of the session. Prepare some small cards or hand-outs about your project. Give your spiel. Make clear that you are not a patient (of course, unless you are,) and then graciously leave before things get awkward.

4. Connect with online patient communities, including twitter

patient community

There are multiple online communities for almost any condition you could possibly think of. These communities themselves can be a wonderful mine of patient opinions, emotions, fears, needs, goals, etc. Assuming you want to talk to actual people and ask them questions, here are a few tips. First, try reaching out to the community leader before joining any private disease community. You don’t want to be a weird lurker and you don’t want to misrepresent yourself as a patient when you actually aren’t (unless, of course, you are – in which case, go wild.) Ask if you or they could start a discussion thread about the opportunity to speak with you. This is especially helpful if you’re up for doing remote research with people – like over skype or google hangouts, or even phone.

You’ll also find a hearty discussion on twitter for most conditions. Find out what hashtag the condition is using, and tweet out your opportunity using that hash tag. In this case, it’d be good to create a basic webpage with information about your study and either a form for interested folks to fill out or a phone number for them to call. This strategy can be good for remote research, but maybe not so good if you need people in your immediate geographic area.

5. Reach out to ‘friends and family’

people2

Depending on how specific your recruiting is, your social network may be a great place to pick up a few additional participants. Send an e-mail to everyone you know who might be a good lead or who may be able to connect you to others. If just one of your people forwards the email to a few friends, you might gain a few participants right there. Be careful about always relying on the friends and family connections – you don’t want to be using the same little pool of people for all of your research projects.

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An important public service announcement about paying patients for their time

 cash money

Pay patients for their time. It is absolutely standard practice to pay any user research participants for their time. Patients are no different. If you are getting paid for your project, you owe it to patients to pay them for their time; they are helping you create a better product, get better insights, and basically create better value for your client or company. They have a lot of medical expenses. Their time is money, just like yours. Pay them! Pay them at a competitive rate!

(If you are working on a passion project and are not getting paid by anyone, that might be a different story. But if there is a stream of cash involved, funnel some of that cash to patients.)

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There’s so much more to talk about, but these are at least a few ideas to get you started. Please post any other thoughts you have or strategies for recruiting patients – I’d love to hear ‘em.

Ski for MG: Stowe Derby 2014

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Yesterday I skied a 20k race called the ‘Stowe Derby’ – a cross-country ski race that starts at the top of Vermont’s tallest peak, snakes down a ‘green circle’ (easy) ski run, passes through a nordic ski center, and finishes on a bike path down in the town of Stowe. It was my first year doing the race, and I decided to raise money through my participation for my autoimmune disease, Myasthenia Gravis. I was very inspired by a number of MG patients I met at last year’s annual conference; many of them have raised money for our disease, mostly through organized events called ‘MG walks.’ MG walks are thusly named because many Myasthenics have a hard time walking for long periods; so walking for a cure is a symbolic way for people to support the cause. I’m fortunate not to have any problems walking, so I decided to use this race as an excuse to raise money while pushing my limits a bit (this was my first XC race ever, and by far the longest distance I’ve ever skied.)

Here is my pre-race interview:

Then I got on the chairlift in my skinny skis:

It was a warm day, and the sun beat down on the motley group of skiers gathered at the top of Stowe mountain – many appeared to be experts and were clad in sleek, stretchy race suits. Another man had a rubber horse head mask on along with jeans, and yet another had some sort of glittery knickers (American usage of the word.) They started us in groups of 5, so that pile-up crashes around the turns would be minimized.

Once they set us free, I flew down the winding ski run on my skinny cross-country skis, tucking along all of the straightaways, gathering speed and passing a few people and getting passed. I stood up and slid around each turn, wobbling here and there but never falling. I waved, smiled and hooted ‘woo’ at the spectators who were gathered around the most harrowing curves to watch the inevitable sloppy falls. I didn’t give them what they wanted – in a race known for its extravagant spills, somehow I kept myself on my two skis for the entire race (thanks, Dad, for starting me skiing early!) I felt in my element, exhilarated, and refreshed.

After saying hello to my husband and friend Laura at the bottom of the downhill ski area, I headed into the Stowe nordic center trails.  The trails were rolling, with some fun short downhills and a few absolutely brutal uphills. I wheezed and pushed through this section of the race, and came to one last, long, tunnel-like downhill in the woods. I was skiing behind 4 or 5 people. Suddenly, almost all at once, they all shot off the trail and fell into the soft snow on the left and right. I’m not sure what happened, or if this was some kind of flash mob, but I made it past them.

Soon after I saw Nick and Laura again for a water-up, as I moved into the long, flat section of the race:

On the flats, I spent almost the entire time alone. I got into a steady routine and finally had some time to think. I coasted past old barns, a half-frozen river, soft white snowy fields. I felt the air fill my lungs, and I thought of my friends who have MG breathing crises and have to be hospitalized. There’s a lot of dysfunction in my body, but yesterday I celebrated everything that is still so amazingly functional. My nerves and muscles worked in sync to propel me forward. My inflamed joints stayed quiet, at least for awhile. My guts had been angry earlier in the day, but they cooperated during the race. I dedicated body parts to my MG and e-patient friends – my joints to Britt, Alan, Emily…my toes to Jess…my lungs to Laura…my heart and blood vessels to Sarah…my two working legs to Joe…my muscular strength to my MG brethren who couldn’t have participated in this race. My eyes were strong – no double vision, no droopiness. I silently thanked my neurologist and herbalist who helped me get to this point.

I appreciated this time to focus my thoughts and energy for a few minutes on the patients (MG and otherwise) who have inspired me over the past two years. It made crossing the finish line feel like more of a meaningful accomplishment.

Photo Feb 23, 13 57 36

My biggest thanks go to my husband Nick and friend Laura, who supported me today, and to all of the very generous people who donated to my race and are enabling me to give over $1600 to the Myasthenia Gravis Foundation of America. I’m so proud to be able to give a substantial amount of money to a cause that can have a direct, positive impact on patients like me, and I’ve been overwhelmed with the outpouring of support from my friends and family. What a great day.

I testified.

Last week, I had the opportunity to testify before the Green Mountain Care Board, a Vermont state institution tasked with ‘ensuring that changes in the health system improve quality while stabilizing costs.’ I spoke briefly about a proposed policy change that would make it simpler for patients to give consent to all of their care providers who want to access their electronic health record via the VT state health information exchange (VHIE). I wrote down my comments and submitted them, and I thought I’d include them here (embellished a little bit after the fact):

2/13/14 Green Mountain Care Board comments – Consent Policy change

I’m Katie McCurdy. I’m a patient and user experience designer, and I live in Burlington. I’m speaking today both as a chronic patient and as a designer who spends a fair amount of time studying systems and human behavior. I’m speaking in favor of the global consent policy change.

As a patient, I have experienced negative consequences when information was not immediately available to my providers at the time when they need it.

Example 1: A few years ago I was in a position of seeing multiple providers – a number of specialists and a primary care doctor – in an attempt to get a diagnosis. These providers all used different EMR systems. I ended up having the same exact same bloodwork done multiple times, in multiple locations, within a very short time period.

Example 2: When I moved to a new city, I had to have new diagnostic testing done because the previous results weren’t readily available. I had to pay more money and had to have a somewhat upsetting test re-performed, because it was easier to re-do the test rather than jump through the hoops to get my records sent.

Example 3: I traveled last year to see a few specialists. In order to try to minimize duplicate testing, I carried around all of my results in this heavy binder. I was *the* expert in my health history, Johnny on the spot with my results. But that burden was on me. And I am a very atypical patient – most patients do not carry around huge binders of their records, and they shouldn’t have to.

What I have experienced is similar to what many other patients have experienced: when there exists friction in a system making it at all difficult to access prior records or records from other systems, providers are going to do the most efficient thing – which is often to simply reorder the test or procedure instead of jumping through hoops to obtain it. This results in waste and contributes to the high cost of healthcare. By removing much of this friction through this consent policy change, we simplify the experience for patients and give providers access to the information they need, when they need it.

If I’m going to see a new doctor in Vermont, and I make an appointment with that doctor, I don’t want to fill in 37 intake forms. I don’t want to have to provide individual consent forms for each provider I see in VT. I don’t do that at Fletcher Allen – when I make a new appointment with doctor in that system, they can automatically see my history. That’s the magic and promise of health information exchanges; that information can flow freely through the system and that it is conveniently, immediately available to care providers.

As a designer looking at this from a product standpoint: I know that most people don’t want to have to heavily customize a product. They just don’t have time. People like things that ‘work’ out of the box. We have the opportunity here to offer a system that ‘just works’ and that is simple and efficient for patients.

Finally, I did have comments about the suggestion from the ACLU that care providers should have to ‘click a checkbox’ every time they access a patient record. As a designer who works on websites and apps, many of these containing highly sensitive and personal health information, I understand the underlying need to ensure that those who access the records are doing so deliberately and only in the course of caring for a patient. However, there are some usability and behavioral reasons why an additional checkbox is not an ideal solution:

  • It adds a repetitive step that providers will take over and over throughout each day; this repetition will quickly lose any meaning, negating the very reason for including it in the first place
  • Adding another ‘click’ means adding time to access the record (and increasing the possibility for errors if they submit without the checkbox clicked) – time that providers don’t have to spare

I suggest that the board and VITL take into account the underlying concern of the ACLU – that care providers will access a patient record in error or malevolently – and find alternative ways to help mitigate these concerns that do not add time or effort to the process of accessing patient information. Some ideas:

  • Incorporate language into the sign-on screen that reminds providers about privacy concerns
  • Make buttons or other calls-to-action more descriptive – instead of the ‘Continue’ button that many people mentioned in the board meeting, make the button say ‘I have consent to view this record’ (well maybe something more brief, but you get the idea.) The language could surround the button as well.
  • Find other key moments to incorporate this language, as needed.
  • Incorporate a function into the VHIE for providers who accidentally access a patient record – so they can say ‘I accessed this record by mistake’ and that fact is logged,instead of the system having to guess whether an accidental access occurred or not.
  • I believe VITL is already thinking in this direction, but I believe the best possible security mechanism for this system would be to provide patients with proactive notifications of who is accessing their record. If they believe a person or institution is accessing it in error or with harmful intentions, the patient can flag that and take action. Let patients help with this difficult problem, and give them some transparency and ownership in the process.

 

Hut life, patients included

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We made our way along a snowy trail in the woods of New Hampshire, a small train of 6 backpack-toting, sled-pulling women (and one man). The area was still recovering from an ice storm, so beneath the inch or so of snow was a thin layer of glare ice, which we navigated and slid along until we reached the ’66 Dartmouth cabin. The log cabin was more like a lodge; what I imagine an old logging camp in Northern Michigan (from where I hail) would have been like. It had a giant main room with a wood stove and fireplace; multiple sleeping lofts piled with those humorous vinyl-coated camp mattresses; gas lanterns and moose paddles hanging throughout. It was rustic and charming.
My companions were a group of mostly strangers, members of the Outdoor Mindset community in the Hanover, NH area. Outdoor Mindset’s goal is to help patients with neurological conditions spend time in the outdoors, doing activities they love. My old friend Jeanie had invited me to the outing; we’d been co-captains of our college ski team back in the 90’s, and Jeanie’s now in med school at Dartmouth. Her husband, Jake, is a co-founder of Outdoor Mindset.

Most of the people on the outing were patients with various neurological conditions like MS and epilepsy, and one woman had multiple autoimmune issues (like I do, but hers were different from mine.) I don’t think they knew I was a patient at first, as I was kind of a random and unexpected addition to the trip, so my pointed questions about their symptoms and diseases might have been a little off-putting at first. But as we walked through the woods, first on our way to the cabin and then from the cabin to the top of a small mountain lookout nearby, we spent a lot of time talking and getting to know each other. I found that many of us had symptoms in common – even if our diseases were different. A lot of us talked about neuropathy – tingling and numbness in our extremities. The conversation swung seamlessly between health talk and outdoors talk; from the cost of healthcare to a hiking trip at Kilimanjaro; from treatment options to a climbing trip or a trek through the Indian Himalayas.

Now these are my kind of people! Maybe just a ‘little tiny bit’ noncompliant patients who don’t always accept the limitations of their diseases. Who push themselves to spend time outdoors and find ways to mitigate the impact their symptoms might have on their abilities. I’ve had the autoimmune disease Myasthenia Gravis for over 20 years, and I’ve recently been diagnosed with Sjogren’s Syndrome as well – both neurological autoimmune diseases. But I’ve always been able to maintain an outdoor lifestyle; I was a ski bum in Montana for a few years, and I’ve lived/hiked/skied in VT for about 8 years. I understand what it’s like to push through symptoms to get outdoors and keep up with the activities that make you feel alive.

***

Later in the evening, a friend of Jeanie and Jake’s came to the cabin and taught an intro class on Pilates. She was witty and a great teacher, and we worked on our ‘six packs.’ Jeanie and the dinner crew made a great meal, and we spent time chatting into the night over a shared bottle of wine and some cream cheese brownies. I shared my personal project that aims to help patients tell better stories about their healthcare when they’re visiting with their doctors, and I got some good feedback and input from the group.

Overall, I was so pleased to have the chance to refresh my mind and body in the woods with some like-minded patients. I’m excited to have now joined OM officially, and I’m hoping to make it to more events and get other patients involved.