Dr. Marybec Griffin graciously sat down with NHF for an informative dialogue to share information on her co-authored Twitter account, Dr. Period Hackers. Read these Q&As and watch the video to learn more, and follow Dr. Griffin on Twitter!
What inspired you to start Dr. Period Hackers?
Dr. Period hackers is something that came out of a very unexpected partnership. A really good friend of mine from high school met Bethany through the Twitter verse, and they've actually never met in person and only sort of know one another, and my high school friend connected Bethany and I together.
And she was like, you know, I'm really interested in period poverty, sort of all things menstrual. And I was like me too. Somebody who often describes myself as that weird girl, who's sitting in the corner of a classroom talking about sex. So, it was really exciting to meet another version of me. I was working on menstrual health, menstrual equity, but from a more medical standpoint, instead of a more like social science standpoint.
We had a call back in August of this year of 2021, and we hit it off and our brains kind of think alike. We just kind of ran with it. She's like "I was thinking about starting a Twitter feed where we do a tutorial every week". And I was like, "Yes. Oh my gosh. What about this idea? And this idea and this idea."
I think it's a really nice blending of the sort of hard medical sciences and then the social sciences. So, understanding like the how's and whys, and then like what is actually happening. To people's bodies on a very biological basis. It's one of those things where I'm always like reach out when this Twitter randos reach out to you respond because sometimes really beautiful things are brought to life.
What have you learned about periods in the blood and bleeding disorders community that stands out to you?
So, this is where I'm going to sound a little bit ignorant. I obviously was aware of blood and bleeding disorders before but hadn't exactly made the connection to menstrual health and menstrual equity.
One of the things that stands out is just how somebody like me, who is really aware of like reproductive health and sexual health needs, things like that, just hadn't put the connection together. And if I'm somebody who's kind of in meshed in this community and in this work and it didn't occur to me, it's probably not occurring to a lot of other people to be thinking about this.
And then also just the sheer number of people that are affected. Then it's just, it's not discussed and leading into these ideas of like medical and visibility. That's partly due to people's gender identity and gender expression and things like that. So, we know that women are femme-bodied people. A lot of times in the medical world, when they're talking to their doctors, they aren't listened to.
Especially like around menstrual things, sometimes taboo and stigmatized to talk about. And so, you're only going to like your parent or your sister for information, and you don't necessarily think that there's something that you should be asking about. I'm overall and constantly struck by how nobody's really talking about this and how nobody's really sort of doing this work. It's a really great partnership between Dr. Period Hackers and the National Hemophilia Foundation that we're working to kind of bring this topic to the forefront, to get people thinking about it, get people who are living with the blood or bleeding disorder, educated and, and helping them advocate for themselves when they're talking to their providers.
And then helping providers also be aware of what's going on, what they should be asking things they should be aware of.
What would you recommend to individuals to be their own best health advocates around their periods?
In my line of research, sort of one of the overarching themes is helping people, normalize conversations around sex, reproductive health, and what's happening with their bodies and what that interaction between patient and provider looks like in that room.
The first thing I think that people need to realize when they're talking about their health is that you should be going to doctors that you feel comfortable. If you don't feel comfortable talking to your doctor about these very kind of personal and private things, regardless of what it is, whether it's something sexual in nature of reproductive nature, menstrual in nature, or if you're feeling uncomfortable telling them that you have a sore throat, find a new doctor.
Find a doctor that you feel comfortable disclosing to because people don't often think about that interaction as a very kind of personal interaction. And there's sometimes just people you don't feel comfortable opening up to. So that's the first thing that I tell people, if you can advocate for yourself because you don't feel comfortable, you don't want to disclose things about yourself.
You can find a different doctor who you can feel a bit more comfortable with. The second thing is to keep track of what's going on with your body and understand what's normal for you and what it looks like on a day-to-day basis. So that way, you know, is this pain I'm experiencing different than the usual pain I experience is this menstrual cycle heavier than a menstrual cycle than I usually experience.
We don't often think back. And it's part of people's recall bias where we think, oh, no, like, I don't really remember what's happened in the future or I'm sorry. I don't really remember what's happened in the past. We can't remember what's happened in the future. I wish I could see time that way, but I can't.
We don't always think about what happened in the past. And then we also, as humans, just sort of assume that the things that we're experiencing now, the relatively good health that we have now, we're just going to be things that always sort of endure in the future. And that's not the case.
Our bodies change, we grow, we age. Things just change. And so, understanding what's normal to you when you go into that interaction with your provider and you can talk to them about like, “this is the change that I am seeing and here's how it's different for me,” is really important because it's unique to you.
And maybe the change isn't like the new thing that you're experiencing, it isn't something to be concerned about. But if it concerns you because it's outside of your realm of normal, I think that's really important.
And then the other thing. I think patients really need to be educated about not only what their normal is, but what normal is in general. I think that's where Dr. Period Hackers can really step in and help, is there's a lot of people don't know what's normal, especially around menstrual health. They only have their experiences, their experiences of any sisters or femme-identified siblings or parents. And we know that there is a lot that plays in genetically and people who are related tend to have some more similar kind of experiences.
So maybe it's normal to that family, but on the larger spectrum, it's maybe on one of the two extremes of normal or something like. Really going in and asking your doctor questions. I, again, I track everything to make sure that my normal is my normal, as things change as I'm aging, if my menstrual cycle changes, I note those changes and then I am a very persistent kind of type a patient.
I always go into my doctor with any questions that I have written down. That way I'm reminded of what it is that I'm going to ask them what it is I'm concerned about and how things are changing for me. And that way I know that I'm advocating for myself. I'm getting the care that I need and I'm having any kind of worries or doubts, or fears addressed in that appointment because the worst thing that can happen, I think is when people leave medical points.
They don't ask the questions that they need to, and they leave feeling just as nervous as when they walk in. And that's not the point of getting healthcare. You should feel better when you leave the room or you should at least have more information about next steps, even if it's a difficult situation when you leave that room with your provider.
What should people with blood or bleeding disorders, or parents of someone with a disorder, know before their period beings? Essentially, what can the parents or individuals do to prepare before they enter period having age?
I think for anyone who is living with a blood or bleeding disorder, understanding all of the different facets of the medical condition and how it might play out is really important.
And I think people know that because they've obviously been living with us for all of their lives up until that point. And then I think it's important to understand what changes are going to happen in your body. What menstruation is going to look like, why the process happens is I think there's also misinformation or lack of knowledge around what happens during menstruation and how menstruation changes over a person's life course as well. And then to ask those questions about how menstruation and the blood and bleeding disorder work together. What are some things that maybe they need to be more aware of things they should be concerned about things that aren't really that big of a deal.
So again, I'm somebody who likes to make lists and things like that. I make lists of questions and anything that I have no matter how small, unimportant, or ridiculous seeming it is. I write it down because even though it might seem ridiculous when you're writing it down, if it's something that you're going to be concerned about, the worst thing that can happen is for people to, to be nervous because they're afraid to ask a question.
I always say that I hate this phrase, the "dumb question" is the unasked question, because if it's a question that you have, chances are other people have it. And that means that there's going to be some kind of information out there.
I think Googling questions is a really loaded thing to do. I think if you can Google it and you can find a community online that exists, that is going to provide you good medically accurate information, then it is a great thing to do if you are Googling it. And you're just going to that first webpage that pops up that makes you more nervous or is giving you information that's not reliable, then Googling isn't your friend. Again, I think this is where the role for people like Bethany and I were around Dr. Period Hackers with the National Hemophilia Foundation. I think that's where we step in because we can provide that information that's coming to you that's medically accurate. That's done in a judgment freeway and it's coming from the perspective of all questions are good questions. If it's something you're concerned about, then we want to help.
Much of your education and research involves an interest in the HIV crisis. How much did you know before working with the blood and bleeding disorders community about the intersection of the hemophilia community and the HIV and AIDS crisis?
I'm going to date myself here a bit. But as a child, I watched the HIV epidemic unfold on TV. I was a child of the 80s, so I was watching all of this happen and all of this misinformation, disinformation, and sometimes just really confusing stuff happened. And it was coming from people that I trusted adults on the TV who were presenting the news to us.
It's one of those things that's kind of always been in my brain. So, it's not just coming from the realm of HIV work and things like that, but it's also coming from the Hemophilia Foundation. My first job ever, I was going to say out of college, my first job ever, and not just out of college, was working for the New York City Health Department in their bureau of HIV and AIDS services.
And I was working specifically with Ryan White federal funding, which has provided for people who are uninsured or under-insured. And as most people know, Ryan White was a young child from Indiana who was living with hemophilia and the virus is transmitted to him through blood transfusions back way, way, way a long time ago in the 1980s that.
The blood community, blood banks, things like that weren't testing the blood for HIV. They weren't screening it properly. Not even, not properly at first. They weren't even screening it at all. So, in my mind, the HIV aids crisis and hemophilia bleeding disorders, things like that have always been linked. And it's thanks to so much work from people who are living with hemophilia advocates, things like that, that we have the measures in place now for blood screening and things like that.
And it was one of those things where one marginalized community, one kind of invisible community people living with hemophilia really helped everybody who was living with HIV, you know, traditionally speaking, it's been gay, bisexual, or other men who have sex with men, injection drug users, things like that.
But once we sort of had these like innocent victims, people who had become positive, who were now living with HIV as a result of a blood transfusion, that's really what spurred government action on to take the HIV aids crisis seriously. And to realize that it was affecting all people in the United States, of course, anyone is at risk for HIV.
Cause it's just a viral, it's a virus, right? There's viral transmission, things like that. But it was really seeing these young people. With hemophilia or other people with hemophilia who were becoming positive and all, because we weren't putting into place these protocols, these safeguards. In my mind, it's always been something that is very much linked and to communities who are often marginalized by scientific research and just kind of stigmatized in general, they were able to work together for a mutual interest.
Watch Dr. Marybec Griffin's Q&A video here:
