Cheryl Miller has written an excellent article, “Blogging Infertility,” in The New Atlantis. She brings up a lot of themes that have been echoing throughout my other reading: a once-silent group newly empowered by the internet; teaming patients with similar profiles; home-care tips (there could be a whole blogroll on injections, btw, starting with AmyT , heading over to Spicy Sister, then Lisa).
One of my favorite parts of the article was an explanation of this alphabet soup:
I am Tertia, I am 35 yrs old, dh is 30, TTC 4 yrs, dx = PCOS, stage II endo, irregular AF and I don’t O on my own. 3 x injectible IUI’s, all BFN. IVF #1 = cancelled due to falling E2’s. IVF #2, zero fert, rescue ICSI, BFN. IVF#3 = BFP, but ectopic, 3 x FET’s = BFN, IVF #4 = BFP, but MC 8w3d due to T21, IVF #5 = BFP, twins, loss of one at 21w, the other born 25w6d, died after 10 days in NICU.
If you squint this could be the sig line for an ACOR subscriber or other e-patient community member.
Another favorite outcome of reading the article was my reconnection with Melissa, creator of the blog Stirrup Queens and Sperm Palace Jesters, whom I met standing in the check-out line at Peggy Orenstein‘s reading of Waiting for Daisy last year in DC. Melissa was kind enough to answer a few questions about being an e-patient, evaluating treatment choices, and combating stereotypes.
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?
Absolutely. I think the Internet has made it easier to be a strong self-advocate. All the talking that is not taking place in the waiting rooms is taking place on blogs and bulletin boards and people are able to look at another person’s experience, search for similarities with their own, and bring questions back to their doctor to help move along their treatments or get a diagnosis.
2) Were you always this engaged in your health care, or did infertility trigger it?
I’ve always been the person who has waited and waited to make an appointment so infertility definitely was the first time I took an active role in working towards a solution to a medical problem. I think I also just went along with what doctors told me prior to infertility. But the emotions that emerged from not being able to conceive drove me to become more of an active participant. I couldn’t stand waiting anymore and there is so much waiting inherent in a cycle.
3) In your manifesto, you write about how previous generations didn’t have many choices and our generation may have too many. Can you talk a bit about the internet’s impact on that situation?
I think you read so many stories that it brings out the what ifs and makes it difficult to stop–to stop treatments, to stop trying one solution or another. The drive to stop (and I think it can be healthier sometimes to stop than to continue) has to come internally because you can always find the next thing to try or the person who went through 14 IVF cycles and the 15th worked.
Having choices is definitely a good thing and I’m glad the technology exists. But it’s hard to walk away or to know which path to choose. Some of it is chosen by the doctor, but sometimes, the decision is left in the hands of the patient.
4) In Miller’s article, she writes about how infertility was a “silent disorder” and went on to talk about how this generation is no longer silent – do you agree? Has the internet had an impact on this “coming out” process? Related to that, have you taken inspiration or learned techniques from other formerly “silent” communities?
If you had asked me this question 2 years ago, I would have said that our generation is far from silent. But now, 2 years down the road, I can see the huge difference between speaking about it online and speaking about it face-to-face. The Internet makes discussion easy and it can be a misleading barometer of how open people are in the face-to-face world.
I think my generation is more “out”–that there are simply more of us that are willing to speak about it frankly and openly vs. my parent’s generation. Which is not to say that everyone is open or that it is no longer a silent community. I think we’re doing a good job connecting within the community and talking within the community and building in-roads within the community. And that is the first step. The next step is taking it outside the community, tearing down the stereotypes that are often presented in the media, having frank discussions in the same way we now do about other diseases that were whispered about years ago.
e-Patient Dave says
Well hi, Melissa. I find myself having a strange reaction to our meeting: on the one hand I want to say “Hi, fellow traveler” and on the other hand the links I’ve just read leave me feeling I can’t possibly experience what you’re experiencing, which contradicts “fellow traveler.”
Perhaps our challenge (my challenge?) is to see what we have in common, because when we do that, our community will spread to a much more universal base.
Sounds like an interesting discussion. I think a good starting point is to see where our paths first cross. Or, starting from a different angle, where they first diverge.
e-Patient Dave says
I’ve got to hit the hay but let’s keep this alive. My whole venture into e-patient and participatory medicine has been centered around my case, my experience, what I faced.
I first “got e” when my primary, immediately after diagnosis, handed me a link to a peer community. In it, I immediately found more current and useful information than on any established medical source, and got to observe the thoughts and feelings of many other people. I felt better informed about what I faced, which in my case had a hefty dose of high risk of death.
I would guess, though, that you (and your community) face never-ending (terminal?) uncertainty about whether a dream would ever come true – a dream that seems to be central to your identity.
I fear I’m putting words into your mouth – not trying to – I’m making an awkward attempt at empathy.
I may not be back for a couple of days – ttyl.
I am intrigued by this mention of the difference between online and offline “openness”.
Apparent anonymity is a fact of life on the internet. I’m not entirely sure what to make of people who put their lives out there in public (on myspace, or facebook, or open blogs) saying extraordinarily personal things about themselves without regard for their own privacy. Is it that they don’t care about their privacy, or that they are naive about the long-term implications of having that information out there?
Perhaps it is generational – I am older, and didn’t grow up with the internet. I think of identity theft and random google searches by employers. These are things that one should be aware of.
On the acor lists, I see quite free discussion of deeply emotional and personal issues. Once you have been diagnosed with a frequently terminal cancer, your survival becomes paramount. Issues of privacy become less important.
I think that there is much more opportunity online to reveal yourself to others. In face to face encounters, you are responding to the willingness (or lack thereof) of others to address your issues. What you say is going through an internal censor because you see reactions as you speak. So many people are uncomfortable hearing you talk about the realities of a cancer diagnosis, about death, about terminal illness.
Online, you can reveal yourself totally, without external censorship, and then later find out what the reaction is. This offers a kind of freedom along with vulnerability. Online, also, you may be working with a group that is larger and more focussed on the same issues you have.
But is this always a good thing? I worry about the loss of privacy.
You raise good questions. I think that there are two sides of the Internet (or more than two sides). And the one where I fall has openness but that openness doesn’t necessarily step into the bounds of being flippant with important privacy issues. I do talk about my diagnosis on my blog but I am very protective of other details that are not pertinent to discussing infertility. Anyone who employs me in the future may google and find this information, but I’m not sure how much it would affect me. Again, this also speaks to my unique situation, job, and the fact that I’m publishing a book about infertility (so it’s hard to hide it in the face-to-face world regardless).
e-Patient Dave says
Your point about privacy is well taken. Anything one posts on the Internet (including a blog like this) could theoretically leak out. One solution for that is to use an anonymous nickname.
But that provides a different challenge: web sites that allow anonymous posts are often the ones with a lot of jerks.
A compromise is a site that allows anonymous posts but requires that you (privately) register with a real email address.
I think openness gets more complicated when you have had a cancer diagnosis, especially in terms of future employment. On the other hand, for those who are, essentially, terminal, does it really matter? They aren’t expecting to be employed.
I’ve become a public figure due to my cancer advocacy activities – and luckily the cancer hasn’t recurred and my prognosis is good. I also have a very common name (as I have discovered) which makes it harder to find me through a google search. There are many Deborah Bells… and Debra Bells…