[image quote]: "It occurred to me in that moment that I was not the only person living with this disease and I wasn't alone... I think I had heard the term 'diabetes' prior to my diagnosis, and never really thought anything about it." - Christopher, Episode 07; Type 1 diabetes patient

[image quote]: "It occurred to me in that moment that I was not the only person living with this disease and I wasn't alone... I think I had heard the term 'diabetes' prior to my diagnosis, and never really thought anything about it." - Christopher, Episode 07; Type 1 diabetes patient

07 My Disease Secret w/ Christopher Snider (episode page)
Description: This week Cara finally talks to someone with a disease people have actually heard of: Type 1 diabetes. Christopher Snider is creator of the My Disease Secret communities, ePatient advisor for Stanford’s MedicineX conference, blogger at tobesugarfree.com, and host of the Just Talking podcast. He also has Type 1 diabetes. In this week’s episode, he talks about living with Type 1 Diabetes, the divides within the diabetes community, getting involved in the community himself, and launching the My Disease Secret platforms.

CS: Christopher Snider (guest)
CG: Cara Gael (host)

[interview clip]
CS: For a lot of people, just that basic, you know, “me, too” is… is so powerful.  And that’s powerful for people regardless of the patient community.  And that was something… it took me finding somebody else to realize that I wasn’t alone with diabetes.

CG: Hey there and welcome you to In Sickness + In Health—a podcast about chronic illness, disability, medical traumas, and everyday uncomfortable healthcare experiences. My name is Cara Gael; I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more.

I hope you’ve been enjoying the show so far, I’m certainly enjoying hearing from you. I am looking for a couple more people to help us transcribe our episodes for people who can’t listen, or would prefer to just read. I’ve already had one person volunteer, but ideally I’d like to get one or two more people, so they can trade off if they’re not feeling up to it. If you would like to help, you can reach me through the contact page on insicknesspod.com, on Twitter @insicknesspod, or at insicknesspod@gmail.com.

If you’re new to the show, welcome! Nothing said on this show should be considered medical advice. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, but I wish you a lot of luck. Every person is different, even within disease groups, so none of my guests should be regarded as official representatives or spokespersons for their conditions. Please respect their very personal choices, and unless they ask for it, please don’t make suggestions about treatments or lifestyle changes. As will come up again and again on this show, unsolicited medical advice is almost never not annoying.

The podcast is now in it’s third week, we’re reaching people all over the world and getting a great response. If you haven’t gotten a chance to listen to our other episodes yet, there are a bunch to choose from. In our first week, we released our Dysautonomia Series, which was five episodes of POTS patients with different primary diagnoses. Last week’s episode was part two of one of my conversations from the first week. We talked about disability, advocacy, and the things we worry about.

I know most of the people I've talked to so far have had conditions most people have never heard of. But In today’s episode, I talk to someone who has a disease people have actually heard of: type 1 diabetes! I interviewed Christopher Snider, creator of the My Disease Secret communities, ePatient advisor for Stanford’s MedicineX conference, blogger at tobesugarfree.com, and host of the Just Talking podcast. I’ll be on Christopher’s show in a couple of weeks, but when I interviewed him for In Sickness + In Health, he talked about living with Type 1 Diabetes, the divides within the diabetes community, getting involved in the community himself, and launching the My Disease Secret platforms. If you check out the show notes for this episode, I’ve linked to all of the places you can find Christopher and his projects, and where you can get more information about diabetes.

According to the CDC, Diabetes affects more than 29 million people in the US, and more than a quarter of those people remain undiagnosed. The World Health Organization estimates the global prevalence of diabetes among adults aged 18+ to be about 9%.

Diabetes mellitus is actually a group of metabolic disorders with three main types. In this episode we talk about type1 and type2. As Christopher points out in the interview, Type 2 is the most common by a large margin, accounting for about 90% of diabetics. The third major type is gestational diabetes, which occurs during an estimated 18% of pregnancies.

The different forms of diabetes happen either when the pancreas is not producing enough insulin or the cells of the body don't respond properly to the insulin produced. Many people are aware of diabetes, but don’t know much about it, or what it means for the people living with it. Christopher talks about some of the misconceptions and differences between type1 and type2 diabetes.

[interview clip]
CS: Alright, so I have Type 1 diabetes and, compared to Type 2 diabetes, the basic difference is that I require insulin injections to basically function.  I take insulin for every meal.  I have a basal rate that is a constant drip of insulin that is going into my body to break down all the carbohydrates that I eat that eventually turn all that food and everything into energy for my body to continue to function.  For Type 2 Diabetes, the pancreas is essentially overworked but it’s still trying to do a little bit of something, so that’s when… so whenever you hear or read some things about how diet and exercise can reverse Type 2 diabetes; one - that’s false.  I mean, the assertion is false but the general idea of diet and exercise can help with diabetes management with Type 2 is an accurate statement because the pancreas is still trying to do something it’s just not nearly as effective as it can be.  With my diabetes, Type 1, my pancreas straight up just left.  It is on strike, it is mutinied, it is never going to come back; at least as of right now as far as the technology and science is concerned.  So I require insulin constantly to… to live.  That’s kinda the basic of it.  There are a lot of nuances about the overall differences in how it’s treated and how it’s perceived.  Type 2 has a major, well diabetes in general, but Type 2 has a major stigma revolved around lifestyle.

[intro pt 2]
CG: Much of this comes from a lack of understanding of the difference between causes and risk factors. The WHO defines a risk factors as "any attribute, characteristic or exposure of an individual that increases the likelihood of developing a disease or injury.”

Poor diet and lack of exercise do not CAUSE diabetes, they are RISK FACTORS for diabetes. Like many diseases, the exact cause of diabetes is not fully understood, but it is likely a complex combination of genetic, environmental, and lifestyle factors. In people who have genetic predispositions for diabetes, poor diet and lack of exercise amplifies their risk for developing diabetes. Better diet and exercise are general health recommendations that can help with the management of many conditions, but they are in no way treatments or cures for anything. This misunderstanding leads to stigma for a lot of different chronic health conditions.

Stigma is something that is going to come up again and again on this show because it is baked in to how our culture deals with illness. So stick with In Sickness + In Health as we dive in and try to normalize these issues and work to end that stigma.

CS: Because people think that if you overeat, you will get diabetes and, for some people, I mean, obesity is definitely… there’s a factor in there with obesity, but for some people it’s just genetics and it’s an unlucky roll of the dice and you are going to get it no matter what you do.  And it’s difficult because there is a lifestyle component to getting Type 2 diabetes, but that’s not the only thing and a lot of people and a lot of the media, a lot of the punchlines, a lot of the jokes, a lot of the irresponsible things you’ll see on the internet or just around the world revolve around the idea that just simply overeating equals Type 2 diabetes or just diabetes in general.  And that sucks for the people with Type 2, that sucks for the entire diabetes community because then you get people with Type 1 saying, “I didn’t cause my diabetes” and then, all of a sudden, by making that simple statement, you are asserting that people with Type 2 did it to themselves, which isn’t true.  So, in… in trying to defend yourself because of … because of pure… because of genetics on the Type 1 side, you’re all of a sudden perpetuating the myth on the Type 2 side.  And there’s a constant battle, and it’s really unfortunate to see, that goes around just the idea of what diabetes is and what diabetes isn’t.  And for people… and when people just want to try and advocate for themselves or for their children or whatever, they are essentially standing on top of the other… the other portion of the disease community and… so rather than standing side-by-side, there’s a constant struggle to be the person at the top of the mountain screaming the loudest.  And things like this always rear their ugly head, particularly in November whenever it’s, depending on who you are, American Diabetes Month or Diabetes Advocacy Month or whatever.  I mean, November is our month to shine, in theory.  I mean, kinda like how October is traditionally… people always associate that with breast cancer.  November is for diabetes.  And there’s…  I guess, just recently, there’s a big kerfuffle about an awareness campaign launched by the JDRF.  I’m not sure if you’ve noticed a lot of people with diabetes have changed their profile pictures to this blue overlay saying “T1D looks like me”.  I actually participated in it because I think it’s kinda cool and my wife has Type 1 diabetes (and we can get into how we met and everything like that), but there’s something to showing off what diabetes does look like.  And for a long time, the JDRF had its own stigma of only being… only caring about kids with diabetes and they used to be Juvenile Diabetes Research Foundation; put kids on the front page, easier for fundraising.  But kids with diabetes turn into adults with diabetes and it was difficult for some people to rationalize that, especially whenever it’s their child that we’re talking about, and it’s like “No, no, no… I want this thing… you told me five years - this is all we’re going to have to deal with”.  And everyone is told the “five year cure” is coming upon diagnosis, but the reality is that science is really difficult and it’s going to take more than five years for this to happen.  And so, the JDRF says, “Alright, well, hey, this is…”  Instead of just saying, you know, “Kids only get Type 1 diabetes”, let’s show the world what Type 1 diabetes really looks like; let’s see the overall diversity of the Type 1 diabetes ecosystem.  And, in doing that, I guess - I haven’t actually seen evidence of this, but I’ve heard enough grumblings – that people started to more or less sling mud at the fact that, “Hey!”  you know, “Type 1 diabetes looks like that, but I also have diabetes, even if it isn’t Type 1.  What about me?” and it’s… there’s just a constant struggle for attention because it is serious and because there is often a joke and a punchline that people try really hard to kind of make their assertion more valid than any others.  And it’s really difficult to see because I believe in what the diabetes online community has done and what it is capable of doing in the future, but this something that I’ve seen through “My Diabetes Secret” is that there is so much in-fighting and so much misunderstanding about what diabetes is and isn’t within the diabetes community.  And if there’s that much lack of… if the lack of understanding is so great within the diabetes community - we have this every single day – how the Hell can we expect to convince Congress to increase funding for research.  How the Hell can we convince anybody else out there, outside of our own little world, that diabetes is a big deal and that you shouldn’t be making jokes about it on sitcoms and things like that.  And it’s… I mean, it’s difficult because you have to fight both of those battles, right?  You have to… you have to wage those worldwide awareness campaigns.  World Diabetes Day is coming up soon.  But, within the diabetes community, I see posts constantly, “I didn’t cause my diabetes.  You should shut up”.  And Type 2 says, “I didn’t cause it either.  Calm down”.  And it’s just… it’s a constant battle back and forth and it’s really frustrating because at the end of the day, we all agree that diabetes sucks, but it’s a matter of, like who’s, you know… it almost feels kinda like the Republican debates where everybody has to scream louder and things become more extreme and more ugly and it’s… and I actually just thought of that analogy, but it does make a little bit of sense because whenever the shouting does start, it eventually will… the volume starts to increase even louder and louder and becomes even more hostile and then you’ll end up seeing people say, like, “Hey, I’m going to take a social media break for a month or two because I can’t deal with this”.  And it happens all the time and people do it for various reasons, but, in particular, the overall divide between the Type 1 and Type 2 community causes a lot of strife and a lot of turmoil and it really, really sucks because whenever we work together we can do a lot of great things.  But there are so many instances where it’s just like, “Hey, you don’t know what you’re talking about and I’m going to yell even louder than you” and it’s like, “No, you don’t know what you’re talking about” and it’s just like, “People, can we…” it’s not even just “Can we all just get along?”, it’s “Can we just, like, take a moment?”  I don’t even care if we have to get along, but just, like… just take a step back, walk away from the keyboard, put down the phone, I don’t know.

CG: Yeah.  I mean that… what you said about lifestyle and people blaming diabetics for bringing it on themselves is something that I see a lot across the board, across different chronic illnesses.  Not necessarily from people within the community, although there is some of that, but, like, what you said from the outside world who doesn’t really know anything about this stuff.  I can’t even imagine, you know, if it happens to me, who is someone who has a condition that no one knows anything about and that victim blaming happens and that, like, “Oh, well, have you just tried exercising more?  Have you tried changing your diet?”  If that sort of thing happens to me, I can only imagine what it must be like to live with diabetes, which, Type 1 or Type 2, has such… is so poorly understood by the general public.

CS: I mean, 24 hours ago I didn’t even know how to pronounce what you have, so, I mean, that’s a whole other battle right there as far as awareness is concerned.  But, yeah, it’s… I don’t know.  And, like, I worked with the… I worked for the home office for the American Diabetes Association for, I think, three and 1/2 years, so I have seen plenty of comments about how the ADA only cares about the Type 2 audience, which is not true.  I mean, they do a lot of great advocacy, diabetes camps.  They do a lot of Type 1 stuff, but if you look at it from a pure numbers game, which… it’s difficult to say that diabetes is a game, but from a pure numbers perspective; the Type 2 audience, the Type 2 population, massively outnumbers the Type 1 audience.  And that’s just… and that means that, you know, certain programs are going to be skewed in that direction because there’s a greater opportunity there to make a difference because diabetes itself, regardless of the type, is a worldwide epidemic.  There’s a lot of that… there’s a lot of diabetes going around the world and, you know, part of that can be helped or mitigated, in part, by changing some lifestyle factors.  But, at some point, you know, genetics are going to win out no matter what you do.  And, it’s like, okay, so, I mean, as far as, “If I have my diabetes already; what can I do now?  Okay, I can definitely exercise.  I can definitely try and eat better.”  So, I mean, I do things like eat vegetables, eat broccoli.  Team Broccoli is a thing that I was never a part of prior to diabetes.  I had a whole “picky diet” thing before that, either way, but just having a more well-rounded diet is great for my diabetes management.  And anybody, regardless of what they’re living with, can benefit from that; but diabetes in particular, that definitely helps.  But it’s just difficult to see people react so severely whenever… even if they lack the context, they lack the full understanding for why these things are happening, or they don’t want to take the time to understand it, or they just… they don’t care because, “My kid didn’t deserve this and I’m going to do whatever I can to try and fix it or to try and make sure that the funding goes in the right direction”, or “I didn’t do this to my self”, or “All these other people are mad at me”, it’s just… there are so many other different perspectives on it.  But, I mean, the real problem is that everybody cares so much, but there’s just no way to unify that passion for one, you know, resounding effort.  And I’m not sure what it’s going to take to ever get to that point.

CG: Yeah, that’s interesting.  Can you tell me a bit about getting your diagnosis and, like, how you felt at the time and how you feel about it now?

CS: I feel fine about it now, more or less.  I have to, you know; it’s not going anywhere, so I cope through humor.  As mentioned, my wife has Type 1 diabetes.  We met because she also worked at the ADA.  She was in the communications department; she was responsible for blogger outreach at the… whenever they first started actually interacting with the online community and whatever.  She sent me a message or an email, I think, and she followed me on Twitter and I saw her picture and I was like, “Oh, she’s cute and she’s local”.  So then I started sort of stalking her even though she might have had a boyfriend at the time and then, I don’t know, whatever, you know, we’re married now so it’s all good.

CG: Yeah, jokes on him.

CS: Yeah, well, no he was a total jerk regardless, but yeah.  So my diagnosis – I was diagnosed in 2002; my freshman year of college.  I had all the classic symptoms; the weight loss, the frequent urination, exhaustion, all that fun stuff.  At the time, I was in… I guess you could call it denial but I just thought it was, like, the stress of trying to get into the engineering program at my school and it was like, “Oh, no no no.  I just get through these classes and I’ll be fine”.  But then my parents, who hadn’t seen me since they dropped me off, were like, “No, you look terrible.  You need to go to the doctor”.  And the doctor said, “Pee in this cup,” and then they call like an hour later and said, “Alright, we need to draw some blood.  You need to go to the hospital,” and I spent four days in the hospital trying to figure out how I’m going to eat a peanut butter and jelly sandwich and what I’m going to do about my multi-variable calculus test that I was going to miss as a result of being in the hospital.

CG: Yeah.  Off the top of your head, do you know what, like, the average age for diagnosis of Type 1 is?

CS: No, but there is a whole range of stuff.  Like, I’ve known people who were diagnosed as adults who were misdiagnosed as Type 2.  And then I was diagnosed at 18, my wife at 19.

CG: But, as you mentioned before, like, people used to refer to it as Juvenile diabetes, so people usually think of getting diagnosed as a child.

CS: Yeah, so there’s… I mean, we could have a whole separate podcast about names and identities and things like that because there have been, like, change.org petitions to change the name of Type 1 diabetes or Juvenile diabetes or whatever to something else or… it’s just like, “I don’t understand why you’re making this a priority”.  But, at this point, it definitely covers a wider range than, I think, what it used to.  I think, you know, earlier in the classification of diseases there might have actually been cases like that, but people could get by on Type 2-style treatments as an adult even though they had, technically, Type 1 diabetes.  So it’s… there are definitely a lot of cases , a lot more cases, where people as adults are diagnosed as, I think it’s called, latent autoimmune diabetes something, or whatever.  Butit’s not –

CG: It’s something like that.  I read the Wikipedia article ahead of time.

CS: So, I mean, it’s one of those.  But, so, you get a couple of examples like that where all of a sudden there’s a wide range of possibility there.  And that complicates things for advocacy, obviously, because you can’t just say it’s a “kid thing”, but it’s also not just an adult thing and, again, it’s not just a lifestyle-factor thing.  It’s genetics and they don’t necessarily care, they don’t play by rules.  It’s just, one day I was fine at college and the next day – boom! – I had to, you know, drink three Gatorades and it was all going through my system within an hour.  It just… it just kinda happens.

CG: Yeah.  Wow.

CS: So, when I was first diagnosed, I was given syringes and vials and I had to mix insulins and do a whole bunch of weird stuff and that was a whole kinda weird thing and, I don’t know, like, I didn’t really think anything of it.  It was just, “Here’s the new thing to do to get by”.  I didn’t really think about the gravity of the situation.  I didn’t think about the fact that this was going to be with me forever.  I just kinda added it to my list of things to do to get through.  By the end of college, I think I was still doing okay.  I was exercising.  There is still a bit of a “honeymoon phase” where your pancreas is still producing insulin but not at the rate as it was.  So I wasn’t totally reliant on my ability to count carbohydrates and dose insulin appropriately for that food that I was eating.  And then once I left college, my first job had me traveling a lot and my diabetes management took a back seat during that time period and my A1C, (which is a general average of your blood sugar over the past 90 days – it’s not the be all, end all – but if you’re talking to people with diabetes or diabetes professionals, you hear the term A1C; that’s just like that kind of snapshot number of “how well are you doing?”, even though that doesn’t tell the full picture, we can get into that if you want), but my A1C definitely rose during that period of my job and I had to sort of find a way out of all of that because the work itself wasn’t necessarily that exciting and the lifestyle that was going along with that work was eventually going to cause some serious damage.  And around that time I… I don’t remember exactly when I joined Twitter, but I remember listening to a technology podcast and they were talking about Twitter and I think I signed up for it and somehow I found Kerri Sparling.  She’s “Six Until Me” on the internet (sixuntilme.com), and she’s one of the OG diabetes bloggers.  There’s a handful of people who I consider pillars of the diabetes community; they’ve been around forever and they are… they’re fantastic people.  And I found her blog and then it occurred to me in that moment that I was not the only person living with this disease and that I wasn’t alone.

CG: Yeah, that’s an interesting moment, isn’t it?

CS: Yeah.  It never really occurred to me, like, you know, how, like, I had heard the term diabetes prior to my diagnosis but I never really thought anything about it, but up until then I had never met anybody else with diabetes; it was just me and my insulin.  And the people that were close to me at the time, they didn’t think anything of it, they didn’t really know how to joke about it or whatever, they just accepted like, “Hey, Chris has to take a few extra minutes before he eats to do whatever,” or “Hey, we need to wait a few extra minutes before we leave our dorm room so Chris can, you know, can stab himself in the stomach,” or whatever.  But that was just part of the lifestyle.  But it never really occurred to me that there were other people out there doing that.  Finding her blog, all of the sudden it occurred to me, “Wait a second!  There are other people out there”.  And for a while I just passively lurked on the diabetes community.  I found a few other people and started following them and just generally interacting and sending a few Twitter replies here and there.  And then, I guess, December 31st…  yeah, December 31st, 2008, I had a really rough New Year’s Eve and I created a blog and I started venting about my diabetes.  So 2009 is when I officially started my diabetes blog and the first, like, six months were really, really angry just because I had a lot that I never really thought about but this was an opportunity to actually focus on what I was feeling and just how angry diabetes made me and how difficult it was to really live with this thing and try to get it under control.  And then after a while I kinda just fell into a groove of, okay, I guess you can call it acceptance.  And, yeah, I just sort of kept going along with the blog stuff and eventually my now-wife found me through the blog and I’ve met a lot of great people, I’ve gone to some great conferences, and, just, I have a lot of great friends; some of them even came to our wedding.  It’s, you know… I mean, the diabetes online community is… it is a family of strangers, and that’s something I’ve said before, but it’s pretty great whenever you get a bunch of us in the same place.  We just all go out and get a cupcake together because that’s what we do.  And it’s been… it has been… it’s been a life-changing thing for me and, in some degrees, it actually has saved me in finding all these people and interacting with them and just coming to the realization that I’m not alone.  It took going to Stanford Medicine X, a conference that involves the intersection of technology and medicine (and I’m on the executive board - full disclosure), but going to that conference and talking with other people from other patient communities and realizing that they are doing the exact same things and having the exact same conversations, it occurred to me, “Holy crap, we’re not alone in any of this”.  It’s not just a diabetes thing; it’s arthritis, it’s cystic fibrosis, it’s whatever.  We all… I mean, if you want to get into the specifics, that’s fine, but, generally speaking, we’re all fighting for the same big picture things.  And that’s kinda cool.  And it never occurred to me prior to that because my world was only diabetes advocacy; it was only diabetes, only diabetes.  And then, all of a sudden, it’s like “Whoa, whoa, whoa”!  I guess, I mean, being a little selfish, there’s a whole world of podcast guests out there for me now because I can find all these fun people and I can learn from them, from their patient stories, and learn from their advocacy efforts.  But it’s… it’s been a fun five or six years of just sorta learning how to do this and I still don’t have all the answers, but I have a better idea of what I want to try to accomplish and how I want to try to accomplish it.  It’s just been a lot of growth and it’s mostly because of just signing up for Twitter and starting a blog and kinda, you know, listening and then eventually interacting and people responding.  And it’s just… it’s kinda wild to think that the internet is capable of that whenever we… as we’ve discussed in the past that, you know, it is also capable of some really horrible, horrible things.  But I mean there are… I mean, the fact that I’m married to a person who I met through the internet, through Twitter, basically, is just one of those great examples of how the internet is capable of great.

CG: Yeah, that’s awesome.  So, you started out with your blog and then you created “My Diabetes Secret”.  That was your first anonymous platform for people to kind of air their grievances or, you know, their guilt or whatever it may be.  Can you tell me a little bit about the process of starting that and how you’ve grown it to other diseases as well?

CS: So, Kerri Sparling – again I’m going to mention that name because she’s fantastic – she had a post… I think she shared something from PostSecret that, I think, if it didn’t explicitly say “diabetes”, it severely implied diabetes as far as what that secret was talking about and within that blog post she actually opened up the comments to… for people to leave them anonymously (normally, like, you have to put your name and email address just for verification).  She let that one… that post go for anonymous comments and I think it had, like, over 150 comments.  Like, she gets a lot of traffic just because she’s been around for whatever and that’s fine, but there were over 150 mostly anonymous comments of people giving their own secrets.  And, I don’t think it was in that instance that I just had kind of like a moment of clarity, like, “Hey, that was a great one-time thing.  Why not try to do that for the long term?”  So I just tried to kinda workshop in my head what this could look like and which kind of platforms would work for this.  And prior to My Diabetes Secret I had tried to engage the diabetes community on Tumblr before.  And I had something called the Daily Dexcom because I take pictures of my continuous glucose monitor, that display, the little dotted line, rollercoaster thing, that shows how horrible my diabetes management is.  I take so many pictures of that, I felt like, “Hey, if I do that, I’m surely not the only person.  Let’s create a place for people to submit those.  And because the pictures are already on their phone and Tumblr is a mobile-friendly platform, it should be easy for them to upload.  And that didn’t really work out too well.  But the ideas… I’ve still been… I’ve always wanted to try to find a way to engage the diabetes community on Tumblr, because I know that there are a lot of people out there that were doing that kind of stuff.  I’d had success in a couple of other efforts on Twitter, but Tumblr was still sort of a big mystery to me.  So I used Tumblr to have a submission form within the overall platform for it, so it makes it easy.  You can submit stuff anonymously by putting in the name “anonymous” and the email address “anonymous@gmail.com”.  I don’t remember how I found that out, but it works.  And I just… and for that submission form, if you go to mydiabetessecret.com, you’ll see there’s only one tag on there and that’s “diabetes”.  And I wrote a post and I told a few people about it and they shared it and enough people started coming in to submitting that enough people that were following the “diabetes” tag on Tumblr found it and they started interacting with it.  And then just through the general nature of organic growth, that was two years ago now and this blog has 3,700 followers.  

CG: Wow.

CS: It’s, yeah… I don’t know how that happened.  But it’s been… so from that initial, like, introductory post and telling the right people so that other people found it and initially, sorta, kinda seeded the conversation to begin with, then the Tumblr community more or less took over.  And now it… you know, there are close to 1,000 posts now just on My Diabetes Secret alone.  Granted, it’s been around the longest, but it’s been really great just to see whenever a new post comes in and all of a sudden the likes and the reblogs… for people that aren’t familiar with Tumblr, the only… the two main interactions are you can “like” it, you just put a little heart, which I guess now Twitter does, or you can reblog it, which is a repost to your own blog.  And certain submissions will just get a lot of response and I think the one that actually has the most response of all time with 770 notes, which is just insane, “I don’t understand why diabetes is one of the few diseases that isn’t romanticized.  Cancer and mental illnesses are considered beautiful and the people with them are strong and powerful, but diabetics are considered weak and are blamed for their disease.  There is nothing beautiful about the blood and needles or the way my hands shake when I’m low or smell of insulin.  And I hate it”.  That was submitted April of 2014.  770 notes.  That’s 770 examples of people interacting with it and, in my opinion, saying, “Me, too”.  

CG: Right.

CS: And those notes are… each one of those notes is one person saying, “Me, too”.  And that’s been a really powerful thing.  I feel strongly about what this has been able to do for people that don’t necessarily want their name associated with those feelings.  For the people that are, more or less, in air quotes, celebrities within the diabetes community, they have to sometimes put on the person of always being in control and I know that’s not true because I’m never always in control.  But, for them, if they don’t want to necessarily share, with their name associated with it, the bad times, this is a place for them to do that.  For the people that don’t have a blog, that don’t have Twitter, but they know of this stuff, if they just want to share something and get it off their chests, this is the place for that.  For the people that just want to blow off some steam, this is the place for that.  For the people that want to anonymously slander people with Type 2 diabetes, unfortunately this is also the place for that.  I’ve seen a lot of mudslinging that goes back and forth in the diabetes community and my general rule of thumb for this stuff is “no names”.  As long as you don’t say, “Chris Snider sucks” in a submission, I’m going to let it through because that is the ugly side of what’s actually happening out there.  And while I’m not sure if I’m actually providing any solutions through this, I’m presenting opportunities for other people that have a chance to really make a difference; that have fundraising capabilities, that have a potential to influence, you know, policy or whatever.  They can say, “Here are examples of what’s actually happening out there.  What are we doing to fix this?”  And that’s sort of the big picture of what I have in mind for all of this stuff.  It’s just that I’m not trying to present solutions.  I’m trying to identify problems.  I’m trying to identify opportunities for other people that are smarter than me to address.  And I... at some point I had the idea after My Diabetes Secret had been around for over a year and had been pretty successful, “Why isn’t there a My Cancer Secret?”  That was something I put out on Twitter and I got a lot of response for it, like, “Hey, you should do that!  That would be a great idea!”  So my first attempt to address this question of, “Why isn’t there a My Cancer Secret?” was to create a broader version of My Diabetes Secret for the entire chronic disease community; everybody – one site.  And I worked with a lot of people, I worked with various advocacy, within various communities trying to figure out – okay, Tumblr only allows 30 tags on their submission form, what are the 30 tags we’re going to get whenever there’s the whole world of chronic disease and illness out there?  How do we sort of narrow that down?  That was a whole process in itself.  And then I launched this thing saying, “Alright, everybody.  Here’s a place for you”.  And, for the most part, it didn’t really work.  And I… it took me a little bit of time to sorta come to the… be okay with the fact that it wasn’t as successful as it could have been from the start.  So from there I decided to give each of these communities to interact with themselves and just as diabetes has its own platform now, I’ve taken it upon myself to expand this to a bunch of other disease communities.  So, right now as of this conversation, I have one for chronic pain, I have one for mental health, I have one for arthritis, I have one for lupus, and I have one for cystic fibrosis.  I’m working on one for IBD, for multiple sclerosis, for Parkinson’s.  I’ve got URLs reserved for eating disorders, celiac, rare disease… yeah, I think those are the only ones I have right now.  And allergies; I’ve got… and cancer obviously.  That is my white whale in all of this.  My goal is to have a proper mycancersecret.com that will accommodate the entire cancer community.  And this is a big challenge because, as you probably have seen for the last, like, month and 1/2, people get really mad, one way or another, whenever October rolls around because people with breast cancer say, “The pink-washing sucks”, people without breast cancer say, “Why aren’t you talking about mine?”, and there’s a lot of in-fighting there.  

CG: And, it’s also an awareness month for several other causes.  I mean, I ran into that with Dysautonomia Awareness Month, and it’s also Domestic Violence Awareness Month, and, like, Pregnancy and Infant Loss Awareness Month –

CS: November is also Lung Cancer Awareness Month.  So, I mean, there’s a lot of alive and you only get 12 months so you’re going to have to share, obviously.  But there’s the opportunity there for the cancer community to, while separate, have a joined conversation.  And I’m talking with a number of different cancer advocates from a wide variety of the cancer community to try and figure out, at some point, how I’m going to do this.  But I believe strongly that I need to have a track record of doing this successfully with other communities before I say, “Hey, entire cancer community, you can trust me with this”.  So I have to do this sort of systematically.  And, as a result of all this, it’s a slower process but I feel better about having sort of two at a time whenever I’m launching them.  And then I kind of let them grow and I work with the people.  So, I partner with advocates within these communities to ensure that my introductory post, that the post tags are respectful and that are appropriate for everybody, for everything that they need to identify with.  Whenever there are questionable submissions, I go to them because this is their community and I rely on their expertise for how to actually handle sensitive topics.  So, I understand that I don’t know much, if anything, about cystic fibrosis, but I know some really smart people who either have it or care for people with it, so I approach them and say, “Hey, this is what I’ve done.  This is what I want to do.  Are you game?”  And, so far, everybody’s said “yes”, which is really great.  So, I’ve been able to create a bunch of these sites and, as a result, I have a lot of really complex – if you want to get really social media nerdy for a minute, I can break down how all this goes cause it’s… I need one of those conspiracy theory corkboards and red strings to go… to show how all these things are connected.  But, for the most part, the system works.  And it’s really exciting and I’m looking forward to the day where I can 1) have My Cancer Secret up and running, and 2), and I’ve not been shy about this, I envision… I have mydiseasesecret.org, I have that URL reserved, and at some point I’d like to turn that into a proper thing.  I’m still trying to noodle around with what that’s actually going to look like, but I’m preparing for the day where I can actually hand somebody a business card and it says, “My Disease Secret” on it; and people will understand what that means; and it will mean something; and it will be awesome; and it could be really, really awesome.  But I have to… there’s a lot of work to get to that point, but I’m prepared for that hopeful future where that can be, if not my full-time thing, that can be, like, the first thing that I mention, like, before my podcast or all the cat pictures that I post.  Like, “This is my thing over here.  I created this platform, this network, this ecosystem”.  And it’s been really, really kinda remarkable to see how each of these communities has embraced it.

CG: Yeah, it’s really exciting stuff!  Have you seen any, like, themes emerge either across all the platforms or on the individual platforms?  Are there any sort of things that come up regularly?

CS: Well, largely it’s that people don’t get it.  Depending on the community, it’s either, “My friends –“, “My family –“, or, especially with the chronic pain-type diseases, “My doctors –“.  Yes, there’s a lot of that and that is something… some of these things I kinda knew, but I had to… I needed to see these submissions come in to kinda really understand what that was all about.  For arthritis, there’s… I’m anticipating one that, whenever the growth sort of occurs, that there’s going to be a lot of submissions around the idea of, “Arthritis is not just for old people”.  I know that’s a big stigma that people have to battle.  For cystic fibrosis, that disease in itself is really isolating; like, you… two people with cystic fibrosis can’t really interact with each other, so the online community is where they have to thrive.  But, for the caregivers… because two of the three partners in the Cystic Fibrosis Society who helped me launch it are caregivers, so I know that whenever they were sharing this stuff, they’re sharing it with the caregiver community.  So a lot of those submissions coming in early are likely from the caregiver community because they’re saying, “My kid”, or, you know, “It’s difficult to see the pain that my child is in”, or, “Sometimes I wish, you know, my kid actually died so they wouldn’t have to actually suffer through all this stuff”.  I mean, there have been a lot of really deep, emotional things where it’s tough to be a parent in general, but then you have to add in something like cystic fibrosis and that really, really sucks.  

CG: Yeah.

CS: And it’s… and that one in particular… so I’m going to tangent off of that really quick to bring it back into the diabetes side.  When I first launched this site, it was just a submission form and just the “About” page.  And then a couple submissions came in talking about how… one person I remember saying, “I sat in bed with my blood sugar at 40 for two hours and then I took some juice and went to class in the morning pretending that I hadn’t just, like, you know, considered dying that morning”.  A couple other people talked about, you know, considering overdosing on insulin intentionally, because they don’t want to deal with it anymore.  And, prior to that - and it sounds a little kinda self-congratulatory - like I hadn’t really had and of those thoughts before, so I hadn’t occurred to me that other people had those thoughts.  It never occurred to me how to deal with any of that stuff.  So, once I started receiving the suicide-type submissions, I had to do a couple of things: 1) was I stopped reading submissions regardless after 8 p.m. for my own sanity, and then 2) I had to create a resources page for people out there.  Because this is an anonymous platform; people are coming in anonymously and I have to promise them that or they’re not going to actually interact with the site.  So there’s not opportunity for intervention.  That’s a big challenge for me and it’s still a challenge today and I constantly worry that I’m not doing enough.  But, given the anonymity of the platform, I have a page that lists; first, mental health resources, like the suicide hotlines and things like that, and then the disease-specific resources for each of the sites.  So, on the diabetes side, I’ve got a bunch of diabetes advocacy organizations, a bunch of different community sites, so if you want more information, if you want more interaction with people and actual names as opposed to just “anonymous@gmail.com”, here are some resources for you.  And that is one of the things that I launch with on every new site; I work with the partners who find the proper resources for people that… I ask them, I say, “For somebody who is newly diagnosed, where would you send them?”  And then I come back with a list of all these different places and links and community sites and things like that.  And each one of these Disease Secret sites has a list of these resources, just to make sure that, while I can’t send a link to somebody specifically, it is at the top of… I have a fixed header on all these pages.  And every single submission that gets posted, there’s a link to the “Resources” page.  So I’m doing whatever I can to surface these resources where available.  Even though I know it’s not enough, it’s the best I can do.  And trying to address that within the different communities has always been a challenge, because on cystic fibrosis, if you’re a caregiver saying, “I wish my kid never got this,” or “I wish, you know, the suffering would just end,” or whatever, it’s one thing.  For diabetes, you’re prescribed a medication that can kill you.  For mymentalhealthsecret.com, I mean, suicide is a post tag, and that was a whole other conversation about how to actually address those things, because I… when I was talking with the partners with this, I don’t want to be an enabler, I don’t want to put an emphasis on that and then, all of a sudden, the result of either reading it or posting it, feel like it’s okay for them to take that next step.  But, if these are actual issues that are happening out there, how do we share this stuff responsibly?  So, ultimately, submissions like that are going through.  But I was super aggressive about highlighting the resources on that page and, like, on my introductory post and on the “About” page – on every static page I can, I’m listing those mental health resources and suicide hotlines and things like that, where I’m not as aggressive about it on the other sites, but for mental health specifically, I knew that that was a very direct challenge that I had to address.  And trying to figure out the nuances of each of these communities and how to address all of these different issues is a challenge.  But, it’s what I think is worth trying to tackle because there’s… I mean, given the reception so far, there’s a lot of a lot out there.  And people need a place to share and if they don’t want to put their name on it, I feel like it’s better for them to come to this place rather than bottle it up.

CG: Yeah.  I mean, talking openly and honestly about your experience, whether it’s positive or negative, as it is a lot of the times, you know, with the submissions that you’re getting, is so important.  And it’s just an opportunity that we don’t get anywhere near enough of.  So, it’s really great, I think, with these platforms that you’ve created.  You’ve gotten some criticism about this; you actually put up a post earlier this week on My Disease Secret (I will link to that in the show notes).  Somebody said, “This is not advocacy.  This is making self-hatred an expectation of being sick”.  How did you feel when you read that comment for the first time?

CS: I felt really, really bummed out.  

CG: Yeah.

CS: It really, really hurt.  And it’s tough because… and I guess maybe I just… I’ve been only interacting in my own little bubble of people that agree with everything that this is supposed to accomplish and is trying to accomplish that it’s like, “Alright, I’m doing something great; can’t wait to announce a new one.  Here we go.  Here we go.  Excited, excited”.  And maybe I was surrounded by “yes” people that I never really thought about how it could be perceived otherwise.  But it really hurt.  This is my baby and for people to… for one person to actually come out and interact with the page to say that, that means that there are definitely other people out there that feel that.  And that’s tough for me to kinda wrap my head around.  And it’s like, okay, well how do I address this?  How do I figure out what to do about this perception?  And when I read it and I read it aloud to my wife and tried to figure out what to do and, from the beginning, I knew I was going to post it.  I knew I was going to… so, in Tumblr, just to backup really quick, everything goes into an inbox and you have to actually hit a little button to queue it up to actually publish, so things will just sit in my inbox; like while we’re talking right now I’ve actually received one submission to My Diabetes Secret.  But, so, I was looking at that submission and I knew I was going to post it.  I’m not… they didn’t necessarily name me, even though my name is on all these sites.  I fully disclose who I am and the fact that I have diabetes because people need to know that there is, like, an actual person behind all this stuff.  But, they didn’t say, like, you know, “Chris Snider, you suck”.  But they said that this site is not necessarily a good thing.  And I was like, “Okay, that’s your opinion.  That’s fine”.  But I knew I also didn’t want to just post it and leave it alone.  So, I worked that evening on writing up a response to address those concerns and those assertions and accusations as far as their perception… their perspective on this site and all these sites.  Because, I mean, I had announced and I continue to announce the fact that I’m developing all these other sites and that we’re working on trying to expand this platform and this network to do great with everybody else.  But, if this person feels this way, fine; that’s alright.  But, if there’s one person, like I said, there’s going to be multiple people.  So I wrote a somewhat lengthy response and at the end of it, I think this is my somewhat mic-drop thing.  I say, “This is not advocacy, but this is connecting the dots between what we know… what we think we know and what we feel.  This is learning from people with life experiences, while different from our own, and coming to the realization that we’re all in this together.  This is compassionate honesty.  This is empathy in its purest form”.

CG: Yes.  I actually pulled that quote.  I was going to read it if you didn’t say it, because I think the way that you said it is so perfect.  
CS: Yeah, I mean, and it’s… and, you know, I had to, you know… there’s like the little kinda somewhat jerk inside of me that wanted to, like, put a little mic drop gif at the end of this thing, but it’s like, “No, no, this is the professional side”.  On Twitter I might subtweet and that’s fine, but… and I actually kinda did, but, for this, you know, I had to be professional about it.  And my wife reviewed it and she worked with me to make sure that I was as clear as possible, you know.  It’s like, “Hey, it’s find that you have this, and I don’t necessarily disagree with some of this stuff”, like whenever this person said, “It’s not advocacy”, I’m like, “You’re right.  I’m not trying to, like, go to Congress with this thing”.  But somebody can go to Congress and quote this thing, that’s fine.

CG: Well, I actually disagree with you.  

CS: Okay.

CG: I think that it is advocacy.  I think that a really important piece of advocacy is giving people a platform to tell their stories.  And, sure, it doesn’t look like traditional advocacy, but it is something that’s really important.  

CS: Yeah, I don’t necessarily disagree with you.  I just… I think… when I think of advocacy, I still think in some of the more traditional terms.  I also think that, for it to be more meaningful, is, for the people that are those ultimate deciders, that they need to have faces and names with it.  

CG: Yeah.

CS: So I think that if you… if somebody comes in with their own story and they site other examples from these sites, I think that that might be the best way to sort of combine both efforts.  I still… like I don’t think that Congress is going to care about this anonymous platform.  But if they have somebody reading this this or if, for whatever reason, I showed up saying, “I’m living with this and I’ve asked a bunch of other people for their thoughts on it.  I have, you know, 5,000 followers on this one page and 2,000 over here and everybody is saying, generally speaking, that we need to do more about mental health”, or whatever, that’s fine.  But, I just… there’s a little bit in there where I understand why they might feel these sites aren’t helping.  And I still constantly worry about that, because, like I said, there’s no opportunity for intervention.  Providing a link to help is not enough.  But I can’t tell this person, “You need help or I think you need help; you should check this out”.  And, if I can’t do that, what can I do?  So it’s difficult for me whenever I understand where they might be coming from, but I also feel really passionately about what all this can accomplish.  So, no, I’m not going to stop; I’m sorry, Anonymous.  

CG: Yeah, no, I think they’re really great platforms and your response to that person was passionate and articulate and professional.  I definitely would have had to take a couple days to, like, cool down before I could write a response that, you know, measured –

CS: The thing that I worried about in taking that approach… because I thought about just, like, cooling off and letting it sit for a little bit and then coming back to it, but I didn’t want them to be like, “Oh, I put this in there and they still haven’t posted it.  Why are you hiding it? Why are you hiding it?”  Like, I don’t know if that would actually happen, but you know, I mean, the fact that I’m posting that, I’m giving them an opportunity to say that, that’s fine.  But this is still my thing, so I get the last word on this, unless you want to come back to me.  And I list my email address on there; I put my name on it.  Like, I’m not hiding from the fact that I am the person running all this stuff.  And, yes, I’m providing an anonymous platform, but, if you, one person, want to actually come back at me, here’s an email address.  Let’s have an actual conversation about that.  Put your name on it.  And that’s not… I’m not trying to taunt anybody, but, you know, at the end of the day, you’re using an anonymous platform to complain.  And that’s what other people have done, too.  They’re complaining about their own disease.  Like, the irony was not lost on me, the fact that they were using an anonymous platform to complain about anonymity.  

CG: Yeah, that’s really funny.  And, like something that I’ve kind of encountered, not so much with this podcast, but in other situations, where, you know, people will just complain about what a person is working on, but they’re not doing anything themselves.  Like, if you don’t like this, you have an opportunity to do something that you do like, you know.  Make… be the change you want to see, you know, instead of just, like, whining about what other people are doing if you don’t agree with it.  Why not try to do something yourself, if you –

CS: Yeah, if there aren’t enough podcasts talking with people with chronic diseases, start your own podcast.  

CG: That’s exactly why I did this.  Yeah.

CS: Exactly.  

CG: Yeah.  What do you beat yourself up for?  

CS: For this stuff or in general?

CG: In general or specifically, you know, about your health condition.

CS: That’s a… I don’t exercise enough at all.  And I have exercised in the past and I know that that does great things for my diabetes management, but I have been quite lazy over the past year.  And I’m hoping that, next year, some significant life changes will help motivate me to improve some of that stuff.  But, it’s easy for me to find excuses to not go to the gym even though I can actually walk there in 15 minutes.  And that’s been difficult because it is… like, I see… I remember how I used to look and I know how I look right now and I’m about to go on my honeymoon so, like, I already get, like, that whole bathing suit envy and fear thing going on.  But, at the end of the day, I’m going to be in Bora Bora so I don’t really care.  But, like, I know that exercise helps and I know that I should… and I know what I need to do.  But, at the end of the day; 1) it’s hard, and 2) I’m also lazy.  And that’s a real challenge for me to sorta accept that and then try to figure out how to move past it and then kinda build upon it to sorta change my lifestyle for the better.  I’m hoping, well, not hoping, but I anticipate some significant changes that will make that a little bit easier to address, but, for right now, it’s the fact that I have a severe sloth factor going on.  

CG: It doesn’t help that you’re getting all of these messages from the outside that, like, “If you just ate better and exercised more, you’d feel so much better”.

CS: I mean, it’s all my fault anyway.  I ate too much candy as a kid and then, you know, 16 years later, that’s when the diabetes showed up.  But, no, definitely I brought it on myself, so…

CG: Yeah, yeah, that’s a really weird cultural thing we have going on.  What do you worry about with your health?  Like, is there anything big or small that takes up a lot of space in your brain?

CS: My wife has Type 1 diabetes.  I worry more about her health than I do my own.  I mean, I know it’s probably the same for her, like, going back and forth.  And that’s a weird balance, but, like, whenever she has a really low blood sugar and I have to get her some juice, like, I literally know exactly what she’s feeling and that really, really sucks.  

CG: Yeah.

CS: And I’ve written this in the past, but I said, “If I could take on twice the diabetes so that she didn’t have to, I would”.  Like, I don’t want her to experience that.  But, I mean, I… it’s not to the point where I put her health in front of mine, but whenever I see the bad sides of diabetes, it’s me experiencing it… or it’s her experiencing it and me, you know, sort of amplifying it in my head because I know exactly what that feels like.  And I know that anger, I know that rage, I know that fear because I’ve lived it, too.  But then it’s somebody else and I have literally no control.  I give her the juice and I know in 15 minutes she’s going to be better, but that’s a really long 15 minutes for me.

CG: Yeah.  My boyfriend has Crohn’s disease, so –

CS: Okay.

CG: We don’t have the same thing, but it’s definitely helpful to be in a relationship with somebody else who has a chronic illness, you know, cause that’s… there’s a level of empathy there that I think a lot of people with chronic conditions don’t necessarily get in their relationships, you know, if they’re in a relationship with a “Muggle” or whatever.  

CS: Yeah.  And some of that is unspoken, too.  Like, if you just, like… if you simply say, like, “I need to go sit down”, like, in that one simple sentence, there’s a lot of thought, there’s a lot going on in the background of that, but he will likely understand.  Even if he doesn’t have the exact one-on-one experience, he will understand, like, “Okay, we have a spoon shortage right now.  I’m going to either, you know, get you a blanket, put your feet up, whatever you need”, but he’s going to know immediately what that means and what he needs to do to react to that.

CG: Yeah.  How does your family deal with illness in general and how do you think that your cultural background might have influenced that?

CS: Huh.  I don’t know.  I don’t really have a family history of diabetes, Type 1 or Type 2.

CG: Yeah, it doesn’t have to be diabetes, just like even, you know, how do they deal with getting a cold, having the flu, that sort of thing?

CS: I don’t know.  I’ve been away for so long; I don’t really remember what it was like whenever I was last sick and needed Mom to tuck me in or something like that.  

CG: Yeah.

CS: I don’t know.  I think, just, generally, I think my stubbornness, like, before my diagnosis, I could probably blame my dad for part of that.  But, not to the point where, like, I discount science or I don’t trust it, but, like, no, I can… it’s like, you know, it’s just a sniffle, that kind of stuff.  But I don’t think, like, my dad was never, like, notorious for, like, trying to be Mr. Tough Guy.  I don’t really remember him ever being sick, but, I just don’t really ever remember that.  So, I don’t think there was ever, like, a history of denial or anything like that.  And, when it came to the diagnosis, it was really… I know it was tough for them, even though we don’t really talk about this, but, like, I was home for the weekend, I was home for an extra two days, and then I went right back to college.  And it was up to me to sort of figure this out and them to hope I would figure it out.  And that’s kinda terrifying.  

CG: Yeah.  I mean, like, I can only imagine, you know, like, “Okay, good luck with the diabetes thing!”  

CS: Yeah.

CG: Like, that must be horrifying.  

CS: Yeah, and it’s always been a weird sort of relationship where, because I had to do all of this, more or less, on my own, we don’t necessarily talk about it and I’m not really sure if we ever would, like,  if I were diagnosed younger, or anything like that.  But, like, whenever I go back home, it’s just like they have juice in the fridge and they just… it’s just there.  We don’t really have to talk about that kind of stuff.  Like, my mom doesn’t necessarily cook anything differently because I have diabetes or my wife has diabetes.  Like, I mean, usually it’s going to be some really awesome food.  It’s going to fill me up.  I’m going to have a bloated stomach for the next couple of days because that’s what you do when you go home.  

CG: Yeah.

CS: But, like, things didn’t necessarily change too dramatically because of my diabetes diagnosis, but we also don’t really talk about it.  So, like, whenever I went on my insulin pump, that was a brand new thing for them, too, but I started it here in San Francisco.  So when I flew back home for the holidays and I had to change out my infusion set and do the whole, like, site rotation thing, I actually took the time to show them what it was all like.  And, you know, there were not necessarily “oohs and ahhs”, but, like, they could understand, “Okay, there’s a little bit of a complex thing happening here and then he just jabs this thing into his stomach and he’s good to go for another three days”.  And they could ask some questions about it and I know that they… like, my parents, they follow my blog and they know that I do all this stuff online, I tell them about it, but, like, my diabetes world is kinda separate from them, which is… I’m not sure if that’s how they would want it.  But, like, I didn’t tell them about my blog for the first, like, eight months.  It took a while for me to sort of come into an acceptance about my online persona.  And then I would say, “Hey, guys, here’s all this stuff if you wanted to read it; this is what it’s like”, but I kinda had to… I had to and also chose to figure all this stuff out on my own.  And it’s not to say that I don’t think that they wouldn’t have been able to handle it, but I also felt like I could do it on my own, too.  So maybe there is sort of that kind of snide or stubbornness in there.  

CG: What are your goals and priorities with the management of your condition?  

CS: To really live a long, long time.  I would love to live to the point where the actual, proper, “Take this and you’re cured” thing happens.  I honestly don’t know when or if it’s ever going to happen, so I’ll settle for an artificial pancreas or something like that.  I think that would kinda be cool.  But, yeah, I’d just… I’d love to get one of those medals that says, “You’ve lived, like, 75 years with diabetes”.  

CG: Yeah, that would be great.  Are they 3D printing pancreases yet?  

CS: Probably, but more in jest and not in, like, medication purposes.  Because, like, this is one thing; so I know the pancreas does more than just product insulin, but I also don’t know what it does, so when one of my friends is like, “Oh, my pancreas, like, stopped working”, it’s like, well the insulin part stopped working but you can’t just rip out the pancreas.  Like, there are other… like the body is a really complex ecosystem and there are other things happening there that I can’t explain on this podcast; I’m sorry.  But, like, it’s not that simple.  So I can’t necessarily just take it out and drop in a new plastic one, which would be kinda cool, but, yeah.  I mean, so, I mean, there are definitely, like, I think it’s Joslin; they give out medals for people, like, I think it’s like 50 and 60 and 70 years and things like that.  So I’d love to have, like, a 75-year medal for Type 1 diabetes; that’d be really fun.  

CG: Yeah, that would be cool.  What advice would you give to somebody who was just diagnosed this morning?  

CS: 1) stay away from the internet, and then, 2) when you’re ready, come back to the internet.  Because if you google “diabetes”, you get the foot amputation stuff.

CG: Yeah.

CS: But if you google “diabetes blog”, then you get a whole list of people that are willing to answer questions, that are going to be sharing stories and sharing pictures of their kids and their cat pictures and all these other fun things.  Like, there’s a whole community out there of people who literally get it, they literally know exactly what you’re doing, they literally have experienced that fear before.  You are not alone in this.  But, take your time in coming to that acceptance.  Because I would never tell somebody that was newly diagnosed on day one, “Hey, join this Twitter chat.  It’s going to great for you”.  Like, that is not the thing.  Like, you need to take time to figure out what it is that you need to accomplish today, tomorrow, this week, this month.  And then whenever you’re ready to take a step out, the internet is going to be here for you; the diabetes community will be here for you.  But, I would not recommend it today.  But, I would definitely put it on, like, that three month plan for somebody that was newly diagnosed.

CG: Yeah, that’s excellent advice.  Well, this is all really fascinating stuff.  This was a great conversation.  Thank you so much for talking to me.  

CS: Thank you for having me.

And thank YOU for listening to in sickness + in health. Check out the show notes for links to some of the stuff we talk about in this episode including all of the current disease secret platforms and to find more information about diabetes. Subscribe and stay tuned for everything we have to come, and check out our Dysautonomia Series from our first week! Let us know what you’ve liked about the show so far. Please rate and review us on iTunes, which helps other people find the show, and tell your family, tell your friends, and tell your doctors!

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