Sheryl Stein, known to many as “wrekehavoc,” dispenses her wisdom and humor on a 6,000-member online community of parents (using good old listserve technology) and on her blog. In this third edition of our e-patient interviews, Sheryl talks about the power of community and how “reaching out via the internet is now an ingrained habit in our world.” Jump in here…
1) The term “e-patient” describes individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. And naturally the e also stands for electronic. Would you identify as an e-patient? Is there another term you’d use?
No doubt about it, I am an e-patient. There are no handy-dandy pamphlets lying about a doctor’s office about my condition, Common Variable Immunodeficiency (CVID); it’s not well-known or fully understood. I rely on the internet to help me stay informed about my care. Not all physicians are receptive to patients doing their own research. One explained to me that he had spent years developing his skills as a diagnostician, only to have patients come in and tell him what they had before he even had a chance to examine them. So there’s a fine line between being an educated self-advocate and being the person who shuts down a relationship with another human who just may know what you need.
I depend on research and information gleaned through the internet: through NIH, through the US’s Immune Deficiency Foundation and the UK’s Primary Immunodeficiency Foundation; through pharmaceutical company sites; and even through individual blogs. I have learned the pros and cons of delivery methods for my gammaglobulin therapy; I have learned more about related autoimmune concerns. In return, I share a bit about my experience with CVID on my blog, as it may one day help someone out there who is struggling to come to grips with the diagnosis.
Additionally, when you receive a whopper of a diagnosis, you have to contemplate your existence within the world of health insurance. You now have a pre-existing condition, and if you lose your health insurance and don’t get picked up somewhere else after a certain period of time, you probably won’t get insured again, a devastating blow to anyone who relies on therapies which are otherwise unaffordable. Thanks to the internet, I was able to speedily discover the laws in my state about health coverage.
2) Were you always this engaged in your health care, or did your CVID diagnosis trigger it?
I have always been a researcher. As a mom, I have used those skills to investigate my children’s health issues online. But what kicked my internet health research efforts into high gear for me was an autoimmune condition, Idiopathic thrombocytopenic purpura (ITP), which landed me in the hospital for two weeks and which, I have since learned, is a common predecessor for CVID. One day I had platelets; the next day, I didn’t. And no one knew why. But I helped to put all the pieces together: family history (a member of my family has CVID), my own health history, and internet research. Although one doctor told me that he believed it highly unlikely for two family members to both have CVID, my internet research, coupled with my personal data, proved otherwise. Two immunologists later, I have been diagnosed, am in treatment, and am feeling better than I have in awhile!
3) In a previous stage of life you managed a prominent think tank’s website – how have you applied those skills and experiences to your current work? Was there anything else in your background that may have prepared you for what you are dealing with now?
I received a masters in Public Policy/Political Science from a program that emphasized operationalizing your strong quantitative and research abilities in real world situations. You were not going to spend your days locked up in the ivory tower of a higher education institution; you were going to go out into the world and make it work. My work experiences in education policy research gave me a solid foundation in analysis and advocacy, which are highly valuable skills when applied to health issues. For one thing, you have to be a very discerning consumer of the research on the web. You’ve got to know which sources are reliable and which are not, as erroneous information can sometimes be life-threatening. Some sites can tout data, saying something absurd like: “100% of the people surveyed said aloe juice is a wonder elixir.” When you find out 100% means one person interviewed out of a total pool of one person, well, that 100% doesn’t mean much, does it.
And once you know what you’ve got, you have to be your best advocate. For the past two years, I feel like I have become a professional patient. Because people with CVID are at higher risk for lymphoma, stomach cancer, lung and other issues, I must visit several different doctors each year and get scanned frequently. (I probably glow in the dark.) There was a time when I was a much more trusting patient. After being patronized and marginalized one too many times, I don’t accept that anymore: not for myself, and certainly not for my family. I am grateful for the doctors I have found who I feel are true partners in my continued health. And I will remain an advocate for my family’s health.
About 14 years ago, I moved away from policy work and started out life doing technical and content work on the internet. I still remember when my then-company was developing a site for health information, a place for people to meet others like themselves. I don’t think that site still exists, but I’ve never forgotten a lesson I learned from that and other sites I helped to develop and manage: community is powerful. You may not know people in your town or city who have your condition. And maybe you prefer a level of anonymity because of your condition. On the internet, you can find people who struggle as you do, and you don’t even have to tell them your real name. And the support is strong. I have seen people develop very real, long-term relationships with others, whether they are pregnant women who are all due to give birth during the same month or people battling cancer.
And reaching out via the internet is now an ingrained habit in our world. Even while managing a think-tank website, I had a lot of emails from strangers, strangers reaching out. They had read our research on health issues, or justice issues, or something else, and could I direct them to a place where they could find people who could help them? Like I said before, community is powerful, and there are a lot of people who are looking for their place to fit in and heal whatever ails them.
4) Was there a lightbulb moment for you when it comes to online engagement and health care? If there wasn’t just one moment, can you cite an example of how the internet played a crucial role in your care or the way you take care of your family?
As I mentioned before, my lightbulb moment came while I was healing from the ITP hospitalization. The medical people I knew were mystified as to why this would happen (hence why it is called an idiopathic condition.) Something in me just knew that it had to do with CVID: it just seemed like this was how it played out with my other family member; and my ITP didn’t respond much to steroids, but it did respond to IVIg, also known as gammaglobulin, the blood product used to treat CVID. So I began to research ITP and CVID, and I came to find out that people with CVID often *do* end up with related autoimmune issues, particularly ITP. Suddenly, it all made sense to me. After blood tests and scans were completed with two immunologists, voila! I had a diagnosis.
While there’s nothing happy about being diagnosed with something like CVID, there is a certain sense of relief you feel when you know what is happening to your body. Would I have figured this out without the internet? Certainly not as speedily as I did.
(If you liked this interview, check out the interviews of the Stirrup Queen and Amy Tenderich.)
Great interview! I am fascinated by this topic and by the wise Sheryl Stein (wreeeeke), and heartened by the steps she’s taking to research her way towards peace and understanding of her medical issues. “Equipped, enabled, empowered and engaged” indeed. Keep the interviews coming….
Sheryl Stein is so right that a community can be found online. Kudos to her for using that community to be active in managing her health.
e-Patient Dave says
Sheryl, it’s so good to meet you. You’re a classic example of using the web to grab the reins and do something to alter the course of your situation.
I’d like to clarify something: you say “So I began to research ITP and CVID, and I came to find out that people with CVID often *do* end up…” Where did you do that research? Journal articles, user communities, sites like the Mayo Clinic database?
Thank you so much for joining us here.
Sheryl Stein says
Hi Dave, and thanks so much for your kind words.
I started out with places like Wikipedia. Wikipedia, of course, is a controversial place for information since you don’t know really who the information source(s) is/are, and you also often wonder what’s been omitted as much as what’s been printed.
Over time, I have come to learn that Wikipedia’s definition is pretty accurate for CVID; and that’s the first place where I read that ITP is often a pretty common experience for people with CVID. But being a cautious information user, that was just a first stop for me initially, sort of like hitting a dictionary to figure out what the heck CVID actually meant.
NIH to me is the most logical place to begin any medical research. But when you start off with a simple search on CVID, you get a lot of journal article references, which are great if you’re a researcher or a medical professional (and can get access to the articles themselves, which is not always possible without a subscription), but not terribly user-friendly if you’re just an average person.
As my knowledge has grown, I have revisited NIH’s site and used it; but as a person who has earned a living making websites work better, I wonder why NIH doesn’t make its site more user-friendly for regular people. At present, it’s geared much more towards medical professionals. A-Z Health Topics, which is found under the Health Tab, works much better for regular folks, but you have to know that it’s there — and if you’re not part of the A-Z, well, what do you do next? (In my case, ITP made the A-Z list, but CVID did not.)
And when I finally *did* find info on CVID, it was listed under Primary Immunodeficiency (a name I didn’t know when I first started out) — and it was located under NICHD! One would think info would emanate from NIAID. Understandably, no disease or condition is a medical island unto itself: but sometimes, the logic for figuring out who would be the lead dog on my condition (and thus where the info may be found) is a little mystifying. It’s not as clear-cut as researching, say, breast cancer.
If you perform a simple search of “CVID and ITP” on Google, there are plenty of journal articles where there are subjects with both conditions, yet another clue. As with NIH, I read a bunch, though I honestly had trouble understanding some of the terminology. (I’m not a doctor, nor do I play one on TV 😉 I checked clinical sites for information; there were plenty of times I began to wonder whether some of the medical sites were just rehashing the same basic verbage.
The Immune Deficiency Foundation’s website pretty much cinched it for me — and in words I could actually understand. I have since found bits and bobs of the info in other places, but in truth, for something like this, it’s such a godsend that there are organizations there with the information presented in ways the average layperson can understand.
I appreciate that the medical community often prefers to use language that is impervious for us mortals; but it’s a relief when organizations that serve the public take the time to make the information clearer. Would that NIH did this better.
The community on the UK Primary Immunodeficiency Association is probably the most active community I’ve found. If memory serves, there were plenty of people there who were talking about ITP and CVID in the same breath. I found people on there who were extremely knowledgeable and helpful.
And information that helped me figure it all out came from a least expected place: the aforementioned parenting list (DC Urban Moms.) I reached out to the list, mentioning my medical condition. As it turned out, one mom on the list works in clinical trials at NIH and knew another nurse practitioner who works with some CVID clinical trials. Another person had a close relative with CVID and shared some fresh international journal articles which I, in turn, shared with my immunologist — they were news to her.
In short, you have to be especially creative and open with your research when you have a condition that is not exactly a household term, like diabetes or cancer. You just never know from whence your next big clue will come.
Cornell Skoff says
a lot of good points