The internet gives us access not only to information, but also to each other. That deceptively simple insight, gained from years of research, contains so much of the hope I have for the future of health and health care.
When we get sick or receive a new diagnosis, we often feel alone, but we shouldn’t. There are people who have been in the same situation and are eager to help if they only knew how to find us. I saw this over and over in my fieldwork in communities of people living with rare or life-changing diagnoses. They shared information, data, and tools with each other, building a knowledge base that empowered everyone who had access to it.
As my career expanded, I widened my lens and found the same pattern among people living with common health conditions – and even among entrepreneurs and government workers who were tackling business challenges, not personal health problems. The more you share your questions and prototypes, the faster you will solve and iterate toward health (or a great final product). And the sooner you can tap into a network of peers, the better off you will be.
I’m now collecting advice from people who have traveled this path, who have bushwhacked their way through the wilderness and found the peer advice they needed. How did they find their people?
Dr. Danny Sands famously gave E-patient Dave a prescription to join an online patient community when he was diagnosed with cancer, which provided the answers he needed when choosing treatments (and which his oncologist credits with saving his life). Emily Kramer-Golinkoff stumbled on a blog written by someone else living with cystic fibrosis and hungrily read every post, setting her on a new path toward more effective management of her disease thanks to her “entourage” of fellow patients. The Heywood brothers created their own network for people living with ALS, now a hub for discovery and research across multiple conditions. Others searched online for years, looking in vain for their allies, trying new combinations of words until Eureka! They found a community.
If you’ve ever found peers — online or offline, even just one person, even to answer one question – please share with me in the comments how you did it. If you have searched, but never found anyone, I want to hear about that, too. Thank you!
At the end of February 2003, I scoured the Internet looking for statistics about preeclampsia. By April, on a WebMD forum, someone suggested I check The Preeclampsia Foundation http://preeclampsia.org. The group was just getting started and I gained emotional support, a lot of information and access to the best specialists in the country.
Thank you!
“If you have searched, but never found anyone, I want to hear about that, too.”
I wonder if that is even possible in 2017. I have seen amazing communities of 40 or 60 members for very rare medical conditions. It makes me think that it would be a close-to-impossible task to find a medical condition for which you cannot a community of people who have coalesced simply because of the diagnosis.
Yes, I see what you mean. I added that at the last moment, thinking of all those who are still without a diagnosis, who don’t yet know what to search for online.
You and I have lived through the era of darkness and fog, when search terms returned no results (Nell Minow’s story about her uncle Burt finding his people always raises goosebumps). There are still patches of fog, corners of health care that remain dark. I want to learn from the people still stuck in that maze. Maybe we can help!
It’s absolutely possible. Especially when there’s not a name for your condition. I’m the biggest believer in the power of online communities and a fairly savvy online navigator, and yet I’ve never found an appropriate community for my sister, who has complex medical issues and doesn’t neatly fit into a medical cluster like cystic fibrosis or cancer. It makes me feel like a fraud to even admit this!
Also, finding the right community isn’t always ONLY about finding others with your same medical diagnosis. I had connected with plenty of other people with cystic fibrosis before I stumbled upon that particular blog, and those previous interactions further repelled me from the community because I didn’t relate to the people at all, which only made my already lonely experience feel lonelier. I had to find people from not only my medical tribe, but people I liked and could relate to also!
That humanity thing has a way of seeping through and pervading everything.
Those points resonate, Emily. The shame/guilt at not being able to find a community, the desire to not only connect around a diagnosis but a philosophy/sense of humor/life stage (like Natalie writes about below). Thank you.
Gilles, I continue to be amazed that the most common cancer – simple basal cell carcinoma – has no community at all, anywhere. I’m guessing that’s because it’s hardly ever dramatic, medically, but at my 3rd and 4th BCCs I had no luck at all finding practical advice on sun-safe clothing and other tips – not to mention teaching people about treatment options.
This is such a relevant question because Google doesn’t always give us the answer! I am looking for folks who want to disrupt emergency room utilization behavior. No luck yet. Thoughts?
Great Q! I will share it on Twitter and see if we can get a conversation going.
Thanks for Twitter post. I will try to connect with California Innovators and collaboration is open to those outside California! As mentioned I’m most interested in exploring tech strategies to divert care, educate and reduce unnecessary ED visits and 911 calls.
I love your vision Lisa!!!!
The Twitter conversation was an interesting offshoot of the discussion here. About 15 people replied, each one with suggestions about other resources, often tagging other people to join in or raise awareness. This is exactly what I had hoped to see happen: Lisa shares a question publicly, I give it a boost by sharing it with my network, and people swarm for a short time to help.
Now, the drawbacks of Twitter were also on display. I’d love to hear from Lisa the percentage of suggestions that are truly relevant. Most people who responded to my tweet didn’t click through to get the deeper context of Lisa’s interest in emergency department use. So help emerged, but was it useful?
This is a tiny parable about “finding your people.”
The connections and advice are a great start. I have already connected by email to Nick and Andre and plan to follow up with Andrew because we’d spoken before briefly. I also plan to explore the contact with a medical device which now has me thinking about ways to augment and enhance the sensitivity of a telemed visit. Even though several didn’t click through, the exchanges were validating and this encourages to me follow through, overcome my fear and pursue this idea. I know it can work I just have to get started and find partners/support. Also, due to your street cred I have a bunch of new Twitter followers!
It was hard for me to find cancer survivors that had both Hodgkin’s lymphoma and a subsequent breast cancer diagnosis. When I was about to give up looking for someone like me, I turned to twitter. Less than 10 tweets later, I found a “home.” My community was waiting for me. In an effort to make sure it was easier to surface information and find other people interested in breast cancer topics, Jody Schoger and I started #BCSM in July 2011.
ME/CFS is a profoundly difficult disease to live with – as it ends up with you unable to connect with people because you often can’t use screens, can’t leave your house and can’t afford energy for socializing that needs to go to brushing your teeth, for example.
I am a caregiver – I found my community of parents online (Facebook).
For people living with ME/CFS HealthRising and PhoenixRising are lifesavers. They not only have patients sharing research, tips and support, they have a few brave physicians chiming in.
One thing that can absolute ruin a social site is the presence of hucksters: people selling a “cure” that “worked for them”.
I appreciate your sharing downsides and pitfalls as well as upsides – thank you.
Finding people and finding people who get you and who you share more than genetic chance with are different things. I have recently allowed myself to see the difference. For me, truly interactive social media like Twitter helps me find a community within the community, which is crucial.
In the summer of 2014 my wife’s friend posted a picture of her daughter’s continuous glucose meter (CGM) reading on her Pebble watch on Facebook. I said to my wife, “I don’t know what that is, but I want one.” Thus began our journey with Nightscout. I found and joined the CGM in the Cloud Facebook page and began looking into how we could remotely access the CGM readings of our daughter Lily, who was diagnosed at age 3 with type 1 diabetes. Just a few short months later we had switched CGMs and were “in the cloud.” Over the past 2+ years we have been amazed with every advancement and breakthrough from the Nightscout movement. We have gone from the amazement of being able to see her numbers remotely to now employing a DIY “closed loop” insulin delivery system. We have found sleep again and are free from so much of the worry that parents of kids with T1D face. Our daughter’s Hba1c is near the range of a person without type 1, and we have reclaimed some of her childhood that was stolen from her back in 2012. The folks with Nightscout truly are our “people.” Their selfless generosity and tireless work to make people’s lives better, all without any desire or plan to profit off doing so, has been the greatest gift our family could have ever received. This revolutionary group of heroes has changed our lives in ways we never dreamed possible. We give thanks for them every single day.
Beautiful. Thank you!
I had trouble finding other people with Crohn’s disease when diagnosed at age 13. This was before the Internet was a household thing. My mom asked the school to reach out to anyone they knew and let them know we wanted to connect if they were willing. We found two people, but they were not great matches.
Eventually my mom and I became the group. People would tell their friends about us when there was a new diagnosis. My mom once got a call from the owner of the nail salon because he had a client in talking about her son’s diagnosis. 8 years ago we made it official and started running a local support group.
What a perfect, timely question Susannah! Thank you for providing such a nice chance to crystallize and share some relevant memories.
When it comes to online orbits and tribes, I dont know how far back to go, but I could start with early 90s when the then-newspaper-columnist me discovered the then-equivalent of PubMed online and read deeply enough into endless ascii screens of studies and stats to secure my belief that even a California girl could get Lyme (ergo, despite local neuro skeptics, it wasnt MS after all) then found user groups sharing the antibiotic protocol and lists of specialists that later sprung me from canes and chairs.
Or I could talk about how that experience hooked me into online forums for self-help of many kinds for adults and our kids, culminating in forum hosting by yours truly, first on CompuServe, and much later on #S4PM.
Or if I wish to lead with most recent, I could simply hop back to last fall to share how friendships at S4PM literally hooked me up with just the specialist I needed to know just in the nick of time to avoid wwhat turned out to be unneeded heart bypass surgery that had been scheduled for me. (Second opinions and shared decisions were pivotal there.)
The net effect may be to bring the olde columnist in me back to the fore with new kinds of writing. But whatever comes next for me, it will include health and self-care and it will reach out to the priceless pals I made all the way through, with different cohorts for different aims at different times, finding more dear friends than I could have ever met one handshake at a time offline. (Some of thise pals, like Dave deB, go back over 25 years.)
So now, still feeling bonded in common cause, I look forward to our whole “e-patient” tribe remaining helpful allies over the decades more I hope remain for us all to keep on supporting and learning from each other.
Carla
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Incredible! Thanks for sharing that history. You have seen a lot of changes. I share that feeling of being “bonded” both in the sense that we share something emotionally powerful and in the sense that we owe service.
I love to see how this is discussed in the States and I’m talking this way because I’m from México and I really met a community and understood the power when I attend MedX the first time, even when it wasn’t a lot of people with my conditions having all of them there taking care of each ones heart was incredible the best.
It’s real that some communities are great and many people are envolved,
Even when there are not much groups for fibro I will be keeping and helping one by one.
As a member of the rare disease community, I think many would expect me to say I found my tribe online. After all, we are the super users of the health care web. And while I’ve met many parents and caregivers to children with Hunter Syndrome (which affects our youngest son) online, spent many hours on the phone with newly diagnosed families, and met many in person over the years, my tribe became those people who not only were on a similar journey (diagnosed around the same time, our children were similar in age), but those who were willing to meet in person and develop deeper relationships not focused solely on our child’s disease. A tribe is more than a single similarity or a common ailment, but the people who will walk beside you and with you through celebrations and funerals and happy hours held via voicemails and instagram.
Oof, this hit hard: “celebrations and funerals and happy hours held via voicemails and instagram.” Thank you, Melissa!
DX in 2003 with Crohn’s; I read about stories via online forums, received calls from close family and friends whenever new remedies were announced, called alternative treatment centers, google scholar-ed evidence informed literature constantly seeking something beyond simply a feasibility test or pilot test. I even faked my way into CCFA conferences as a “medical student”; pro tip – entrance fee is really cheap as a medical student. Later, I dabbled in an organized online community. This online organized community is a venture backed start-up which I will not endorse, but a cool collective of individuals who can collaborate and input data – a massive citizen science experiment to gain more insights on conventional and unconventional treatment options.
Now, I’m recognizing that the practice of medicine is just that – practice! I’m constantly seeking evidence informed literature via google scholar – always asking clinicians which journals they read and becoming more dependent on medical apps to help me remain informed.
FWIW, I haven’t faked my way into CCFA conferences in quite some time.
As a food allergy mom, I found my community offline first. A friend in my neighborhood heard about my toddler’s diagnosis and introduced me to another mom of a kid with food allergies. Since her son was five or six years older than mine, she could talk about preparing for playdates and school with confidence and authority. I drank in her advice about everything — and still do, even now that her son is off at college (!)
But the true power of a peer network was revealed to me when I joined a Yahoo group, a very simple list serve of parents of kids with food allergies in our region. That’s when my knowledge and advocacy on my son’s behalf took off, hooking us into much more high-powered clinical research & care circles.
Note that I’d been researching the impact of the internet on health & health care for about four years prior to this — it took a personal experience to truly shine a light on the path forward.
We need to back the question up — how did you define who were your people at any given time? Over the years, who I thought were “my people” changed. I changed. My needs changed. And so finding one’s people is not a one-and-done thing. It is, if one is growing personally and professionally, a constant struggle. To say that I have “found” my people (past tense) would imply that I know exactly who I am and who I am going to be. Instead I find people, if I’m lucky, who are right for right now — and our future relationship is fluid.
That said, finding people requires — above all else — curiosity. We must be open to the possibility of finding things that we do not know exist or, in a more challenging turn, coming across things that we wish did not exist. Thus resilience closely follows. When we look and do not find or look and find what we do not like, we must keep at it. We must try new things while steeling ourselves with the optimism that new things lead to different results. Perhaps it is a more eventual process than we would like. But we get very little out of doing nothing at all.
I find myself in the situation of having found people but having lost the thing that brought us together. They are no less my people, but they are much harder to access now. Thus I wonder if perhaps it is the natural course of things and I am due for a new set of people. In order to find those people, I must first find where my heart lies. What lifts me up? What brings me joy and stimulates my brain? How do I get more of that? The people who share what’s inside my heart will be where they are supposed to be. I’ve just got to keep my eyes and ears open for the opportunity to meet them.
As someone who has lived with multiple chronic illnesses since I was 4 years old {including type 1 diabetes and celiac disease, among a few others}, I had the strongest family support system–my mom {also a T1D} and my sister lived their lives as if my conditions were their own. We had a celiac-safe kitchen; snack time was always held at a standstill until blood sugars were in range, even when I was 5 and my sister was 3.
What I didn’t realize was what life would be when that bubble burst– I opted to attend school at a Big10 university out of state. No dorms could cook for me so I lived in a studio apartment, renting a ZipCar and heading to the grocery late at night after class, no matter how icy the conditions, to ensure I had safe food for the week. Fears of lows on bus rides to class became rampant and I opted for a continuous glucose monitor–which was noted at parties with comments like “are you a robot?” Nevertheless, I persisted.
My senior year of college came around and I still felt alone in the stress of my daily norm. Standard measures of diabetic health weren’t as good as they used to be–I was always eating on the fly, trying to maintain a normal sleep schedule as an engineer, and started missing more classes due to GI concerns {ultimately resolved after college}. I saw a post on Facebook asking for people to share their chronic illness management experiences with a Master’s student in the School of Public Health and, being the open-book person that I am, immediately replied that I was available for a call.
And that was the start of what is now Find Your Ditto, the only mobile platform that connects people living with the same chronic illness locally for on-demand, in-person peer support. The Master’s student is now my co-founder and CPO of our company and we’ve been pushing our little startup along for the last year and a half, pre-revenue and pre-investment of any kind but still working tirelessly and always hustling.
Feel free to head over to our website– http://www.findyourditto.com — or reach out to me directly on Twitter {@breezygfreezy}. I love talking to people who have the dealt with chronic illness isolation and how I’m working to make a small impact on our special community.
Hi Susannah. This reply of mine reminds me of many years ago, my first ever response/comment online was to a Susannah Fox post. Onto finding my people – which might be ass-backwards for your purposes: It was twitter that ‘found’ me a community of passionate palliative and hospice professionals that changed my life. I clearly remember the recurring theme (still a recurring theme): ”If only people talked about it (end of life) more, it’d save so much grief.”
I introduced myself and confessed I didn’t know what to talk about.
What happened next would never ever happen in real life.
They all welcomed me. Me. A patient-person-non-healthcare-professional. A group of specialized health care professionals encouraged my participation answered my questions and heard my feedback.
OMG.
It was my virtual-community experience that gave me the confidence and cred that led to in-real-life invites (to speak, facilitate, workshop, TEDtalk, present, advise, evaluate, write a book) as the patient perspective in the end of life space.
I am regularly grateful and in awe of these wonderful palliative peeps that I found.
Thanks for (another) wonderfully thought-provoking ‘ask’.
Oh my goodness, Kathy! Thank you!
If I’m right, it was nearly 10 years ago that you posted that first comment. I dug into the archives and found it. What a wonderful gift to the world that you gained the confidence to do the work you do.
Completely amazing to discover that all this goes THAT far back.
At that time I was smack in the middle of my cancer treatment – we didn’t yet know whether it was working. I only learned about e-patients 7 months later and joined the blogging about it.
Increasingly these days I have a sense that we’re turning some kind of corner as a movement. If I had to point to one voice that’s made all the difference (since Doc Tom’s death) in pointing out what we should notice, it’s Susannah’s for sure. It’s a blessing that you’re back on the scene.
Wow. I hope there is no word limit. In my experince “profiling” creates barriers and opportunities.
I started out doing medicine. So until the age of 25 it was going to plan. Then, one year out of med school, I was diagnosed with Bipolar Disorder. The symptoms were easy to mange but the attitude from the health sector was very difficult. On the one hand the medical sector viewed me as dangerously divergent and unpredictable (because I had novel problem solving skills) and the mental heath community viewed me as “not a real patient” (I was refused a position on a panel discussion on mental health because I was “too functional” and did not suit the profile). So I was “without Tribe”.
I could have spent my entire medical career living without Tribe until a chance face to face meeting with IBM is 2011. They were wanting some advice and when I told them about my Bipolar (to ensure they didn’t take it as conventional wisdom) they just said “That is so cool”. It seems that IBM knew lots of people like me. They referred to them as Wild Ducks. So “divergent, unpredictable and highly functional” was seen as an asset and I became a pro bono strategic adviser to IBM and part of the “tech tribe”. A few years later I was approached by Innovyz, a technolgy accelerator to help then launch their first program dedicated to Health and Wellness. I helped organise the private equity component and they offered me a position as a mentor. So I added “educator and mentor tribe”. In 2015 I read an article by Vivienne Ming, co-founder of Socos, about “the tax on being different” and racial prejudice. I identified the common touch points with mental illness and racial discrimination and reached out to Vivienne. We found common ground and I asked her to be on my board and help me deploy the Socos consumer AI in the mental health space. She agreed and I added “entrepreneur tribe” to my growing list. It did not occur to me at the time that Vivienne saw me as a Black Swan (IBM had already called me a Savant). Finally, in 2017, I was given the opportunty to give a small talk at Stanford Medicine X|ED on how we could halve the impact of mental illness in 25 years. While there I met people like me – Consumer 2.0. Patients and carers who were informed, proactive and not prepared to accept the “doctor knows best” approach. So I added “consumer 2.0 tribe” to my list. So I reached out to the key contact is my Tribes (except medicine – the regulators wer still making life uncomfortable) and put out the call to build the infrastructure to deliver on my vision – a 50% reduction in the impact of mental illness and suicide over a 25 year time frame. We’re doing the science, building the supply chain.
All I did was accept people who willing to accept me for who I was rather than who they expected me to be. At the end of the day doctors are there to help people and reduce suffering. I still do that. I just do it differently. And different is not wrong – despite what the regulators might want you to believe.