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.