AS246: Ania Bula on Living with Disability

Transcript

This transcript was generated automatically and may contain errors — the audio is the record.

0:00:29 Thomas: Hello and welcome to Atheistically Speaking. This is episode 246 and I am your host Thomas Smith. So before I get to the interview that you're about to hear, I think I should explain a few things and talk a little bit about it. So I've had people of all different stripes of personality and background and all that on this show, but one thing that hasn't been represented too well on my show is disability. So seeking to remedy that, my guest today is someone who wrote a book about being disabled. It's called Young, Sick, and Invisible, and here's the thing. So this interview, I just meant it to be one episode. I was planning on just kind of covering The basics of the book, kind of Ania's journey and all that, and that would be a good episode, we'd be done, end of story.

0:01:18 Thomas: Well, we ended up going a little long, and I kept thinking, okay, well there's stuff I can edit, I can trim here, we can do a little bit of a longer episode, etc. Well, as we went longer, we reached a point where Ania called me out on what she viewed as ableist language, and then we got into quite a debate about that. So, that I feel like was so worthwhile that I'm going to push this to two episodes because this ended up being an hour and a half, I think. Plus, after that, I want to give some commentary about that debate and about everything that we talked about. So all of this, in my mind, well warrants two episodes, something I wasn't exactly expecting, so the editing is maybe a little awkward.

0:02:04 Thomas: What I've decided to do is front-load it a bit, so this episode is gonna be more backstory about Ania and her life story and all that, and it'll be a little longer, and then Monday's episode is where we'll really get to Ania is more critical of society, of ableism in society, and then, as you'll see, critical of me, there's some words I used, and we debate about that, and that is going to be at least, I think it's at least 30 minutes of that, maybe a little more, and then I can do some commentary on it afterward, because it is a really, it's an interesting issue. You. It's something I've seen, it's something I've heard a little about, but I haven't studied a lot.

0:02:51 Thomas: I wasn't particularly prepared with any arguments. It hit me by surprise. So all that is going to be fascinating. So for patrons, I'm going to go ahead and release that episode right away, as usual. And again, this wasn't anything I was planning on doing. I thought this was just going to do one episode, but seeing as how this is what it was, I think this is the best way to do it. So for patrons over at patreon.com/atheist, you'll get two episodes right away. But for everyone else on Monday, you'll have the remainder of this and the debate and some commentary. So very interesting. But with that said, let's go ahead and introduce Ania and get to the beginning of the interview.

0:03:41 Thomas: Joining me right now is Ania Bula, author of the book Young, Sick, and Invisible. How are you doing Ania?

0:03:47 Ania: I'm doing great, thanks. Yourself? My

0:03:49 Thomas: I'm doing quite well. I'm puzzled by the background noise we're hearing, but I'm going to do my best to filter that out. If it sounds a little weird to people listening, we're not sure why. Sorry about that. We did our best. But I'm gonna try to filter so it sounds just right. But anyway, I you know what? Sorry. While I think about it, before we got, we started recording, my very last episode was with Sean Carroll or a somewhat recent episode. And we were trying to figure out Skype as well. And he said, he said he was at a conference one time where the guy who created Skype was in the audience and they couldn't get Skype to work.

0:04:28 Ania: God!

0:04:29 Thomas: And he's like, yeah, so don't feel bad. Not even, even that guy couldn't get it to work. So I just remembered that just now. I totally forgot he told me that before we started recording. So anyway, totally different topic, Ania. You have what sounds like a very difficult experience and a very interesting journey that I'm very curious to hear about. So I guess let's just go into it. I mean, why don't you tell us about yourself and we'll just go right right into all of it.

0:04:56 Ania: So, as you mentioned, my name is Ania. That's a Polish name. My parents are immigrants from Poland who moved to Canada shortly before I was born.

0:05:07 Ania: Because of a trick of sort of the when you're born here you get citizenship thing, I was the first Canadian citizen in my family at the ripe old age of one day old. My family was very religious, they're Roman Catholic, but they're specifically Polish Roman Catholic. Um, I grew up in a very Catholic household. I went to university to study biomedical sciences. When I was 18, I moved away from home to Ottawa, um, where, uh, while I was going to school, I discovered that I had a series of different disabilities, uh, which got actually worse my second year of university to the point where I had to drop out of school for a semester.

0:05:44 Thomas: Oh, wow.

0:05:45 Ania: Um, it would have been longer if not for the fact that it was the spring semester, so I had summer immediately after that. Um, that's, uh, when I was not diagnosed, but when they realized how severe my psoriatic arthritis was. Okay, sorry about that, that was a random vespa or something. It doesn't quite sound deep enough to be a motorcycle.

0:06:07 Thomas: Right.

0:06:07 Ania: Vest. Um. But. Yeah, um, so, uh, when I took the time off school, we discovered just how bad my psoriatic arthritis was. Um, I was put on a type of mild chemotherapy, um, while they tried to figure out how to get it to stop being inflamed. Then finally I got sent off to a specialist in Toronto who put me on something called biologics, which, um, basically what it does is it modulates your immune system, specifically it lowers your immune system, but by targeting a very specific antibody as opposed to all of them. So the antibody it targets is called tumor necrosis factor, uh, which kind of sounds like it eats tumors, doesn't it? Well.

0:06:08 Thomas: Yeah. Yeah, yeah.

0:06:48 Thomas: Well, why don't you, for those of us like me who don't know anything about this condition, would you mind describing it a little bit? Like what's involved? How you started, I don't know, being symptomatic? Like, take us through that.

0:07:01 Ania: Well, this one specifically, the one I'm talking about now is psoriatic arthritis. Um, it's very similar to to rheumatoid arthritis, which is the one that a lot of people will get at when they're older, which basically causes the inflammations of the joint. The inflammation causes pressure to build up around the joint and basically causes the joint to slowly grind away at the cartilage. And then eventually there's no more cartilage left and you can't move the joint, and you need it replaced.

0:07:26 Ania: In the case, when it comes to psoriatic arthritis, it's not unusual for it to present in young people. Sometimes people people as young as 16 get it, sometimes even younger. As you probably got from the name, it's related to the skin condition psoriasis, which is similar to eczema in that it's sort of a dry skin condition, but unlike eczemia, it can sometimes lead to a sort of a buildup of the dry skin, which creates almost scales. It looks like scales.

0:07:26 Thomas: So how prevalent is it to get it at that young age. Oh, really?

0:07:58 Thomas: Wait, but in your joints or something? Oh, you get that as well. Oh. Okay. Oh,

0:07:59 Ania: No, no, it's on your skin. In people who have psoriasis, 10% of people can develop something called psoriatic arthritis. Because what a lot of people don't realize is psoriasis itself, like eczema, is an autoimmune condition. Basically, what's going on is your body's attacking your skin, as opposed to attacking parts of your skin, which causes them to die and causes the dead cells to build up and creates a sort of rough patch that gets itchy and dry and cracks and bleeds.

0:08:32 Ania: So in some cases, those same antibodies can attack your joints. And that happens, you have psoriatic arthritis.

0:08:38 Thomas: Geez. So, the first treatment was, you said it was chemo?

0:08:42 Ania: Yep. Well, the very first treatments were actually NSAIDs, which are non-steroidal anti-inflammatories. Those are the category of medicines that things like Advil, aspirin, although not specifically aspirin. But Advil, ibuprofen belong to. They have more intense ones like naproxen. So Aleve, for example, is another non-steroidal anti-inflammatory. And they have other ones. So over that period of time, I was on Arthrotec. I was on much stronger versions of naproxen. I was on a variety of different ones like this. And despite the fact that I was on these painkillers, it wasn't helping anything. Like I would Take a painkiller in the morning and these were like ones that you could only take once per day. Like this is how intense they were. And it wouldn't help at all until about about midday where I'd have a brief period of maybe half an hour to an hour where it didn't feel like my leg was going to shatter with every step.

Um, which, which was actually funny because it always managed to coincide just as I was walking to my child psychology class through this extremely busy hallway. And at this point I was working with a cane and during that brief moment, for whatever reason, I'd always have the sort of silly, uh, silly need to do a little dance with my cane because it was the one time I didn't need it and I remember I did that once in the hallway and it was hilarious how often nobody would notice except for this one time

0:08:43 Thomas: Wow. Oh geez.

0:10:07 Ania: When this guy thought he saw something and then turned around really fast again to see if he'd seen it right, except He turned around so fast he ended up losing his balance and he fell. I Felt kind of bad after that, um.

0:10:13 Thomas: Oh wow. So apologies for all the dumb questions. I just, I don't know anything about this condition. Did it just happen to affect your leg, or is that like usual, or was it affecting your whole body but this was

0:10:32 Ania: Usually actually it affects your outer limbs, so it's more common to get it in your, your ankles, your feet, in your hands, in your wrists, things of that nature. I have an atypical presentation in that I get it in my spine and in my SI joints, which is the joint that sort of connects your hip to your spine. So I get it in that one and I get it in that other one.

0:10:55 Thomas: Okay.

0:10:56 Ania: So when I was walking, can sometimes cause, you know, your nerves to react strangely. So it was causing referred pain all the way down my leg. There why there were times where I'd step on my leg and it would feel like my bone was about to shatter. Like that's pretty much what it felt like.

0:11:04 Thomas: Oh, okay. Yeah, oh. Man, yeah.

0:11:13 Ania: Um, yeah. And I went, I was, I actually walked on that leg for a semester and a half. And, I kept trying to do things while trying to figure out what was going on. And then finally my doctor in Ottawa took it seriously enough that he sent me for steroid injections. And. I got the one in my hip a month before I got got the one in my spine. And after I got the one in the spine, the next day I couldn't walk.

0:11:13 Thomas: Oh.

0:11:39 Ania: Like I took a step and my leg just completely collapsed underneath me and I ended up having to sort of crawl to the bathroom. And it didn't get better the next day either. So I went to the ER.

0:11:46 Thomas: My gosh, and This wasn't something they gave you a heads up about or anything? It wasn't like, "Hey, this is a symptom sometimes," was it? Right?

0:11:58 Ania: All I knew is that they had put a needle in my spine and the next thing I couldn't walk. So I'm freaking out thinking they did something to my spinal cord, you know. So, I get to the the hospital and the doctor comes in, like, spends maybe two seconds looking at me, says, "Oh, it's just a little bit of inflammation, you'll be fine in three days," so I wait another three days and it's not getting any better, in fact it seems to be getting worse, so I crawl again but this time I go to a different hospital and I broke down and cried and at that point they took me seriously a little bit more seriously and they said, "Okay, well, we need an MRI," and they gave me some morphine and they promised to call me back that week with an appointment for the MRI, but by the time I got a call back from them, uh, they said that they wouldn't be able to do it for another month.

So at this point, I, like, I can barely get out of bed, I can't really take care of myself, I've been eating takeout I can afford for every day of the week and most of the time getting really sick because I wasn't reacting well to the morphine either, um.

0:12:05 Thomas: Yeah, yeah, but Sorry, are You still, were you still trying to attend school at this point, or had you, okay.

0:12:55 Ania: Um, I was still officially registered and I was still planning on going back to school, but I had contacted my teachers and said I wouldn't be in class that week because I just, I couldn't get there, I had No, I Would have had to have crawled to a cab, take the cab, and then crawled through the university.

0:13:06 Thomas: Right. Yeah. Yeah. Yeah.

0:13:14 Ania: Like at that time I didn't have a wheelchair of my own, which is what I needed basically to get around. So after I found out that it was going to be basically another month of waiting, I realized that there was no way I could do it, so I called my parents and they bought me a plane ticket to Toronto. Um Um, my roommates at the time were really nice. They helped me get to a cab and they actually had me wait in the cab while they grabbed a wheelchair, and the airport let one of them take me through. Uh, so they actually pushed me on the wheelchair through security and everything, which was interesting because it was my first time going through security on a wheelchair, 'cause uh, they can't actually make you walk through the, the metal detector, right?

0:13:49 Thomas: Metal detectors, yeah.

0:13:50 Ania: Because the, the wheelchairs, so instead they pat you down everywhere and they have to like like check the wheels and they check underneath your chair and everything just to make sure that there's nothing there. So I got home, and it was one of the conveniences of the Polish community that we knew a lot of people in the area, including a rheumatologist. So my parents called, and she was actually a good friend of ours. And my parents told her, hilariously, her first name is Ania, too. And I went to see her. She got me an MRI.

0:13:51 Thomas: Yeah,

0:14:21 Ania: You can tell.

0:14:23 Thomas: You don't want an MRA, yeah,

0:14:24 Ania: No, no, no. I definitely don't. You Can tell what I usually spend time writing about.

0:14:25 Thomas: Yeah... that's...

0:14:30 Ania: Sorry. So I got an MRI almost the same, like that same week. Then I got two more actually also that same week, both with contrast and without. And she basically said that it was one of the worst cases of inflammation she'd ever seen. Was, uh... I was really badly inflamed, but it it also turned out that a professor of hers was actually a specialist in this exact condition and was in Toronto. So she called up her old teacher, her old mentor, and she said, look, I've got this patient. She desperately needs to see you. So they got me in to see her pretty quickly.

And it was really interesting because the doctor walked into the room and she basically, like without even looking up from her file, starts talking about scheduling me for surgery. And I'm just sitting there with this look of shock on my face going, oh my God. And at this point I figured that that was a likely option was that they were going to have to replace my hip.

She said that, you know, they just needed to do some some more x-rays just to see how extensive the damage was. And it turned out that although I had damage to my hip, I still had some amount of cartilage left. So it turned up that I didn't actually need to get the surgery right away if I didn't want to. Uh, instead they put me on the biologics, which are the ones I I mentioned before, the ones that attack the tumor necrosis factor,

0:14:44 Thomas: Oh, geez.

0:15:45 Ania: Or more specifically, they block tumor necrosis factor by sometimes work on a lock and key method, which is basically that the enzyme has a specific keyhole and it attaches itself to things that have the right key shape. The case of this medicine, what it does is it has the right key shape, but it stays in there and it gets stuck so that the antibody can't do anything anything else at that point. So it basically renders the antibody useless.

0:16:11 Thomas: Gotcha. So jams the lock.

0:16:13 Ania: Exactly. It jams the lock. So that's how they basically, and so that lowers the amount of that specific antibody. And then the idea is, is that because there's less of that antibody, it's going to spend less time attacking my body instead of actual germs. As a result though, my immune system is suppressed. So I'm at a bigger risk of getting upper respiratory infections. So, uh, people who, who for example, get the flu, who get the cold, I'm more likely to catch it. Uh, that's why I'm a big proponent of the flu shot to protect people like me basically, because you know, you could catch the flu. You'll have it for maybe a week. I'll catch it, I can have it for up to two months. Yeah, I actually caught the swine flu when it was going around Ottawa months.

0:16:15 Thomas: Oh no.

0:16:55 Thomas: Two months of the flu. Blue. Wow. That sounds awful.

0:16:58 Ania: It was because at the time I also had Crohn's disease because that was, you know, by the time that happened, I had found out I had this other condition, which sort of came about because the meds that they were giving me are fantastic for psoriatic arthritis. Within two weeks of taking the meds, I was able to throw away my cane, like I was walking again. It was amazing. But unfortunately, sometimes the meds can aggravate pre-existing conditions like Crohn's disease. And nobody knew that I had Crohn's disease. So it aggravated the condition and the Crohn's. And all of a sudden, I was finding myself being randomly sick, going to the bathroom more often than ever before.

0:17:44 Ania: I was having these random pains in my stomach. And at some point, it got worse to the point where I hadn't really been able to keep food down for about two weeks. So I went to the hospital and they just told me that I was probably just sick. So they gave me, you know, they put me on IVs, they send me home. But over the course of the next two months, I found myself being sick more and more often. But there was always an excuse. Like one time, you know, it made sense for me to have caught a cold because a friend of mine had a cold or had the flu. And then at another time, everybody in my house got food poisoning. So it wasn't that weird that I was feeling sick. But at the end of that two months I stepped on the scale and I realized that in the last two months I had lost 60 pounds. Yeah.

0:18:26 Thomas: Wow, that is a lot of weight loss for two months.

0:18:28 Ania: Yeah. It really is, and at this point I realized this is something more serious than what I think it is and more serious and what the hospital thinks it is, so this time I didn't even wait to see what the hospital would do. I actually just called my parents right away and went straight home because again my parents have connections specifically with doctors. And at this point, I was already getting the feeling that I wasn't going to be able to handle exactly.

0:18:54 Thomas: Well, it seemed like last time that was what was required to really get anything done, which is odd. Hmm.

0:19:00 Ania: Well, I found out why that is later. And I mean, that's something I bring up in my book as well. And that's female pain gets taken less seriously than male pain. If you and I were to go both go to the hospital, and we were both to say, I'm feeling level 10 pain, they would consider yours more serious than mine.

0:19:19 Thomas: Really?

0:19:19 Ania: Because the assumption is that I'm over-exaggerating.

0:19:22 Thomas: That's so weird, because I would have thought it would be the opposite, because, like, women have such a higher pain tolerance, I thought, that I would, I would've assumed, like if a woman says it's pain 10, and women are able to, you know, give birth to children and stuff, I'd say, okay, okay, that must be something really wrong.

0:19:40 Ania: It's funny you say that too, because I actually, when I had my MRIs done about my leg, the doctor's comment was, I can't believe you've been walking on this for a semester and a half or close to a year by that point, because most adult males that I know would have passed out with every step. I was actually the amount of pain they would have expected me to feel from the amount of inflammation that I had should have been such that I shouldn't have been able to put pressure on my leg without losing consciousness, and yet I was walking on it for, you know, how long? Well,

0:20:11 Thomas: So where does that come from? Was there a study done or something? What is

0:20:17 Ania: They have done studies about this that find that women are more likely to have their pain taken less seriously, it's more like it's more often to be blamed on their period, so a lot of times, if, for example, especially if it Has, you know, it's hilarious that you say that, but there was actually a recent study published that said that 10% of medical students at a prestigious university in the United States, we're talking Ivy league at a medical school believed that people of color actually are less sensitive to pain than white people. They actually believe, and this was specifically related to black people in particular too, where they think that black people don't feel pain as much.

0:20:28 Thomas: This, the 1800s? Really?

0:20:59 Thomas: Yeah,

0:21:00 Ania: And like, and that's, that comes from a stereotype coming from slave times where they were saying that it didn't matter that they were beating or whipping or doing whatever to their slaves because black people don't feel pain as much. And yet, despite the fact that we know that that was a stereotype, despite that fact that it was untrue, doctors, people who are studying to be doctors still believe it. And 10% isn't a small number.

0:21:23 Thomas: Definitely, especially for that what should be an elite group of people.

0:21:27 Ania: Exactly. They further checked the study and they actually found that people of color are less likely to be prescribed pain medication for their conditions. Again, because doctors believe either that they're less, uh, that they'RE less sensitive to it or that it's less important to treat it. And also because they believe that people of colour are more likely to become addicted, which is not

0:21:48 Thomas: Well, that's ridiculous because white people are the ones abusing all the prescription medication. Wow, that is crazy.

0:21:49 Ania: True. So yeah, so it's basically like a lot of stereotypes about, uh different, uh types of people filter into the the medical system. A lot of people still believe, for example, that autistic people don't feel pain. So there's this belief that women are hysterical, which I'm wondering if you know the origins of that term.

0:22:17 Thomas: I guess not.

0:22:18 Ania: They used to think that women would become basically hysterical and it was caused by their uterus. And it would in some cases be solved either by fumigation of the vagina or in some places through an actual hysterectomy. And that's actually even where the word hysterectomy comes from, because it was thought that by removing the uterus, they're removing the source of hysteria.

0:22:38 Thomas: Oh my gosh.

0:22:39 Ania: Yeah. Hysteria actually is a specifically gendered condition.

0:22:43 Thomas: I did not know that. I had no idea. What about mass hysteria? I'm just kidding. So, I mean, I do know from reading my Bible, you know, how much of the stuff back in the day, how many of the rules revolved around like, okay, if it's that time of the month, you need to put the women outside the camp. They can't be anywhere near the camp. So it's not surprising that there's so many bizarre beliefs around the cleanliness of women.

0:22:51 Ania: Yeah, yeah.

0:23:11 Thomas: It's unfortunate if any of it still survives to this day. But yeah, in terms of the origin of that word, I guess that makes sense.

0:23:19 Ania: And it's, and it goes even further in that very few studies are actually done specifically on women. The medical studies relating to reactions to drugs, relating relating to presentation of symptoms, all of those, the standard of care is white, young to middle-aged male.

0:23:28 Thomas: Like medical studies.

0:23:42 Thomas: Interesting. Wouldn't you want to just get a random sampling or get a... I mean, I suppose a random sampling will skew white because it will in this country anyway. Well, in Canada, even more so. But yeah.

0:23:54 Ania: But the truth is that they don't actually look at it differently. And now, actually, studies are showing up. They're finding out that this has had major consequences on the health of women, in part because they're finding now, for example, that the dose on something like aspirin, the dose might actually be higher for cis women than it is. And actually, I should say for women in general, because trans women are going to have the same levels of hormones and whatnot in their bodies. But it might actually Be different levels necessary for women. So it might be possible that when women are given medication, they're actually giving getting a lower dose than they should. Women statistically have a higher fat content than men. And some of the medication that they're taking is specifically fat based, which means that they should be getting a different dose.

0:24:41 Ania: For many years, the medical community believed that women had less heart attacks than men, but when they had heart attacks, they were more fatal. What it actually turned out was that the number of heart attacks was the same, but that women, by the time that it was realized they were having a heart attack, were actually on their third or fourth one. The reason being that they presented with heart attacks very differently than men do.

0:25:05 Thomas: Right. Yeah.

0:25:06 Ania: What we consider the the standard presentation, pain in the left arm, chest pain, shortness of breath, is, again, the white cis male standard. And that in reality, actually, women are more likely to present with something that looks like indigestion.

0:25:06 Thomas: Yeah, right. Well, what was the white part come in there? Do people of color have different heart attacks?

0:25:25 Ania: Well, no, It can change, the age matters, because I think people who are over the age of 60 also present differently or something like that. Um, but the white comes in because, and don't quote me on this because I've seen competing studies on this, it is possible that people um whose family come from certain areas have different historical and different biological levels of different chemicals. So like, for example, they might have less um nitrogen or something like, I don't remember it entirely, but they actually have found that there are some cases where people's, and it's not so much based on race, so much as based on where your family was from historically, to

0:26:08 Thomas: Right. Well We can take it. I'm sure I'm not, don't mean to grill you on all the details of all these studies necessarily, but I do take it as a, as a good point that I would think would be pretty uncontroversial that we should base studies on diverse groups of people so that we know, you know, if there is some sort of different reaction, because genetics play a huge factor. I mean, there are definitely different ailments and different diseases that affect different genetic populations, more or less, and it's important to know that. I, so do know an elderly woman who had a heart attack and I didn't even know she was having a heart attack. Like she just, she just had one and then it was like, oh, okay, apparently I had a heart attack. Didn't really even know. So it's crazy how it can be so different for people.

0:26:51 Ania: Yeah. Yeah. Yeah. And I mean, it's, and I mean it's led to some really severe consequences just because, you know, by the time the heart, heart attack was noticed by doctors, uh, the heart was so damaged that the heart that the third or fourth heart attack proved fatal. Whereas because men were presenting earlier, they were able to receive the treatment that they needed in order to prevent future heart attacks and thus had a greater rate of survival. Um, so it's that kind of thing. And and those kinds of biases infect so medicine. And I've seen this firsthand as somebody who ends up in the hospital a lot as well. I have a chronic condition that's known to send people to the hospital frequently. But despite that, because I've been to the doctor, to the hospitals so frequently, I'm treated as a drug seeker a lot of the times when I go in.

0:27:39 Ania: I actually wrote a post called Politics in the ER, Five Ways Doctors Decide You're a Drug Seeker. And a lot of the things come down to basically biases. If you appear to be poor, they're more likely to assume that you're a drug seeker because they associate poverty with drug use.

0:28:00 Ania: If you're very specific about the type of meds that you need, like, for example, somebody who has a lot different conditions might be, then you must be a drug seeker because you're looking for a specific high. Um, and the problem becomes that it becomes a risk for me to go into the hospital even if I need to, because I don't know if I go to the hospital this time, am I going to be taken seriously, or are they going to treat it as me looking for drugs and is it going to make it harder to get taken more seriously the next time I go in, doctor

0:28:27 Thomas: Well, I mean, yeah, but, but shouldn't that just be solved by good documentation of your condition? What's, what's the issue there? I mean.

0:28:36 Ania: Bias, that's what the issue is. If a doctor comes in and basically sees me and and that's another thing so

0:28:41 Thomas: Well, but it's on your chart that you have this condition, right?

0:28:43 Ania: Yeah But they might decide, for example, example, that I'm complaining about the pain too much. Because specifically when I go into the hospital, I'm going in because my Crohn's pain has gotten worse, which to me means something about my condition has worsened recently and I need additional help. But if they think that I'm over-exaggerating, then they might think, okay, yeah, she has this condition, but she's looking specifically to get high. What I find hilarious about that is I have a prescription for medical marijuana. If I want to get higher, I don't have to go to the hospital.

0:28:49 Thomas: Oh, okay. Right, right.

0:29:16 Ania: And for that matter, if I actually did want to get high, because I have specialists who know I have this condition, if it was just a matter of getting those drugs, all I have to do is call up my doctor and say, hey, I need some extra pain meds. It's

0:29:28 Thomas: So what do you recommend is a good way to fix that? Because while I totally agree with what you're saying, prescription drug abuse is a huge problem. What do you think would be a better way?

0:29:39 Ania: Actually less than people think it is when

0:29:42 Thomas: Well, are we talking Canada or the US? Because it's a huge problem in the U.S.

0:29:43 Ania: People see a lot of people say that it's a huge problem in the US, but what they're looking at specifically is how many people are using those specific types of drugs. And if you have a lot of people who suffer for chronic pain and the only thing that they can receive is opiates, then it might look like they have an addiction when in fact they actually just have a condition. A lot of people with chronic pain end up needing higher levels of the painkiller, so it can look like their building a tolerance, or they do legitimately build a tolerance. And at the same time, if it's part of your treatment, does it really matter if you're addicted?

0:29:47 Thomas: Okay.

0:30:19 Thomas: No, not at all. It's not, what I'm talking about is overprescription. So there's a, there's an issue of people going to multiple doctors and getting, and on purpose getting multiple, you know, different prescriptions of these drugs. I'm not talking about people who actually have a condition that, sure.

0:30:31 Ania: And that's the problem though. A lof of people who have conditions, a lot of the people who I know who have these conditions have been forced to do that because there's no other way to get the correct dose that they need. Because when they go to doctors and they say, hey, look, this amount isn't working for me anymore, or I find this amount doesn't take the edge off the pain, but I find when I use this amount, it does.

A lot of times doctors have their hands tied and will say, I'm sorry, I can only prescribe this amount. So then that person, in order to actually get the pain med treatment, are then forced to go to several different doctors to get the prescription so that they can actually take the dose that they need.

And I mean, yes, there are people who abuse the system, but a lot of times abuse of the system can look the same as somebody actually just trying to get the system to work for what they need, and a lot of times a lot the laws that go into place with regards to opiate use have more of an effect on legal use than illegal use.

0:30:35 Thomas: Hmm.

0:31:27 Thomas: Interesting.

0:31:27 Ania: So they actually harm patients more than they prevent addiction. One of the best ways to treat addiction, and we found this actually to be consistently the case whether whether the concern is drugs, prescription drugs or illegal street narcotics is actually by creating a culture that is less shameful of addiction and more embracing of treating it as a medical condition, which it is.

0:31:46 Thomas: Oh yeah. Well, you're not going to get any argument from me there. Interesting, I'll have to do more research into that because I was under the impression that it was more of a problem than I think you're leading me to believe. So I'll have to look into it.

0:31:55 Ania: Well, and also some people, some people also will find that they need, there's been like cases of opiate death in part because people will get a tolerance to opiates and so they keep taking more, but the fatal dose for opiats is a lot lower than say say, for other medications, like, for example, medical marijuana. So what they found is in places where they've legalized the use of medical marijuana and made it easy to access, the number of opiate deaths in that state has significantly dropped. So what that tells me is that the people who are using these opiates are looking for some kind of pain treatment.

0:32:32 Thomas: Sure, yeah, you're not going to get any argument from me there. I think we should legalize marijuana. I don't use it personally, but I understand people need it. And furthermore, I mean, I'm all about liberty, really. I mean there's no reason to restrict things like that. And like you've said with a lot of this drug stuff, you know, the drug war, we could talk about that. I'm sure you have opinions on the the drug war although I don't know how was That as big Of A thing In Canada What's

0:32:57 Ania: Well, the United States funds both sides of the drug war. And yeah, this is a thing in Canada as well. Well, the United States and Canada, yeah, some of it does, too. I mean, we have very similar laws regarding drugs. I think what helps here is because we do have socialized medicine, it is easier for people to get treatment.

0:33:00 Thomas: That Okay. Because I know It was like a Reagan specific kind of thing. I wasn't sure if that so the same time period Did it Go down in Canadah? Hmm.

0:33:21 Thomas: Right.

0:33:22 Ania: But we also do have very restrictive rules regarding opiate use and things like that, which does. And I mean marijuana as a medical use has only been legal very recently in terms of overall history. Moreover, uh, the rules are so strict that sometimes it can even be difficult for patients to use it legally even when they have a legal prescription. So, I Mean yeah.

0:33:43 Thomas: Yeah, well. Does are There employers that sometimes don't let you, or I, I don't know, I'm not in a state where, or I don't have experience with that, but I have heard of times where it's like, yeah, it could be legal for you to use it, but then your your employer might have a problem with it. And then it's just as bad.

0:33:58 Ania: That Can happen, um, I'm on disability which helps, uh, so I don't have to deal with an employer, but my bigger issue is that the Well.

0:34:06 Thomas: Yeah. What a nice setup. I like, that was just a funny way of putting it. Oh, I'm on disability. I don't have to deal with an employer.

0:34:13 Ania: I mean it's yeah yeah.

0:34:16 Thomas: No, it totally made sense. I just, it was a funny turn of phrase. Like I wasn't expecting that. So let, well, let's get back to your story. Cause I, I, uh, all that, I will take all that as a lesson you've learned as why it was so hard to get the proper care. And, uh. That's a really interesting message, but let's get back to you. So, what happened? Where did we leave off? Oh,

0:34:17 Ania: Yeah. Um, But So Where we left off is I went back home because I realized I'd lost all that weight and so I saw my family doctor there and he basically sent me immediately for a colonoscopy. When I got my first colonoscomy done, I was so inflamed internally, internally, that he was actually scared to go very far up because he was just scared that he would touch the side of my intestines and they would just burst.

0:35:02 Thomas: My gosh.

0:35:03 Ania: Because inflamed intestines are extremely sensitive and very, very weak.

0:35:09 Ania: So I got a referral to a GI specialist. And so I went back to Ottawa and back to school. And I started looking for a GI and every single GI that I called had the same information, which was basically that they would be able to see me in eight months. So at this point, I'm maybe being able to keep down about one meal a day if I'm lucky, more often one meal a week. So eight months away kind of seems like a death sentence.

0:35:33 Thomas: Yeah.

0:35:34 Ania: But at the same time, I had an appointment with a rheumatologist who I was sent to by the specialist who was dealing with my psoriatic arthritis in Toronto. She had a really close colleague who was in Ottawa. And so she said, instead of always coming down to Toronto to see me, you can go see him. So I went to go see him and I told him about what was going on in terms of the GI. And he told me he'd take care of it and not to worry about it. And the next day I got a call from Dr. C who it turns out was the leading Crohn's specialist in, um, in Ottawa and actually in the, in this whole region. And he scheduled an appointment to go see him. The first thing he says is your previous doctor didn't go high up enough. We need to do another colonoscopy. So in the space of one month, I had two of them. And he walked out of that colonoscopy and he just looked me straight in the eye and says, you have Crohn's disease.

0:36:24 Thomas: So, oh, okay. Well, in retrospect, the telling made it sound so much... So, you didn't know anything about having Crohn's disease up until that point that he told you that. Gotcha.

0:36:32 Ania: No. The only time I'd ever heard it was when the doctor in Toronto yelled at me for having Crohn'S disease. This was at a point actually when I had no idea that anything was going on. This is before I lost all the weight. It was just because I had a surgery for something called a fistula. And it turns out that in most cases, people who are my age and have fistulas have them because they have fistulizing Crohn's disease. But I was so upset by the way that she mentioned it, and it wasn't an official diagnosis that I just sort of ignored it for several months. But then I got confirmation from from the GI that yes, it was in fact Crohn's disease. So I'm guessing a lot of your listeners don't know what Crohn's is.

0:37:12 Thomas: Probably a safe bet. I know a little bit about it, but I mean... And also, we've already heard what some of the symptoms are, but sure, if you want to go take us through it.

0:37:20 Ania: Yeah. So specifically what Crohn's disease is, it's an auto another autoimmune condition, which means that it's a condition that comes about because my body either doesn't recognize that my body is not an invader, or it's basically overactive, and it just starts attacking everything. So in the case of Crohn's disease, it attacks my digestive system. And it can, it's usually localized primarily in the colon, but it can affect any part of your digestive system from your mouth all the way down to your anus. So I had, for example, oral ulcers, I was throwing up a lot. And it basically causes inflammation of your digestive system. And when your digestive is inflamed, it can cause blockages, like it can actually block things from going through, in which case you usually need surgery to go in and remove that blockage.

0:38:10 Ania: It can cause internal fistulas, which is basically when there's a connection created between two organs, and it can occasionally cause material to pass through the fistula. So for for example, a really common one is one that connects the anus to the skin and you'll actually have, um, fecal matter going through the fistula out through, uh, out through the skin as opposed to out through anus the way it's supposed to, which then creates infection and et cetera.

0:38:34 Thomas: Now, is that related to the one that I know in third world countries women can get? Because I know there's a charity that was devoted to fixing that. I think it's a fistula of some kind. It might not be that exact kind, but safe to say it sounds horrible, but it's something that can be fixed with a pretty simple surgery. But in third-world countries, these women are just totally ostracized because they can't get the procedure. And it's a simple procedure, but it's such a profoundly, you know, kind of alienating thing to have that it's a big problem.

0:38:55 Ania: Yeah. Yeah.

0:39:08 Ania: And I mean, one of the, oneof the fistulas that can be created sometimes is a fistula that connects your intestines to your uterus or your vagina. And yeah, Yeah. And that can actually cause you to be completely infertile. I've been lucky. I haven't had one of those fistulas, but I've basically had to accept the fact that there's a very small chance I'll ever have a biological kid, not just because of my Crohn's disease, but specifically because my Crohn's disease hasn't gone into remission at all in the last decade.

0:39:18 Thomas: Maybe that's the one.

0:39:38 Thomas: So I was wondering actually the timeline on all this. How long ago are we talking that you first had this diagnosis?

0:39:46 Ania: I was diagnosed with Crohn's disease in 2008. I was first diagnosed with psoriatic arthritis in 2006, but it was in 2007 that I started receiving aggressive treatment. So yeah, I've been dealing with this stuff for about a decade now. Um. Some of it longer than others. Uh, well, since official diagnosis, looking back, I realized that I'd had symptoms of almost everything for, for most of my life.

0:39:52 Thomas: Okay. Right.

0:40:15 Ania: Um. But a lot of times it was ignored. Uh, a major one actually was that I was iron deficient anemic for most of high school, and every time a doctor noticed it, it was always blamed on my period. What's actually interesting is they're discovering now that the period doesn't act, that periods don't actually affect your um, your iron levels, because it's not actually blood that's coming out.

0:40:37 Thomas: Interesting.

0:40:37 Ania: It's specifically um the endometrial lining.

0:40:41 Thomas: How did it take this long to figure that out? That's interesting. It's just a persistent myth.

0:40:45 Ania: Because for a really long time. Well, for a really long time, the majority of doctors were men, and a lot of men were taught to fear or to find periods disgusting, so there wasn't that, and there wasn't really that much pressure on the medical community to really look into it, and I don't know, I, I honestly couldn't tell you, uh, beyond that it.

0:41:08 Thomas: Yeah. So, okay. So I think by this time I'm wondering when we're getting to the faith healing kind of stuff. When is that going to play a part?

0:41:20 Ania: Actually uh filters in through all of it. I mean, that's, that's the general diagnosis story. But while I was dealing with all of this, when I was first dealing with my leg issue, I mean there was some time between when I got to see the specialist and when I got the treatments and all this different stuff. And during that time, I, you know, was doing my best to work or do stuff.

And I remember the faith healing actually one happened when I was working in my mother's office. And it was this older client who came in, you know, when he told my mother that he saw me limping and walking with a cane, that he could help me. We just assumed he was going to help me because, you know, he was old and probably had arthritis of his own, so maybe he knew some tricks. You know, but no, no, I walk in there and he was just like, "Do you believe in Jesus Christ?" And at the time I did, so I was like, yes. And then he goes in into how he's a faith healer, and basically puts his hand on my ass and this other one on my crotch, and he starts rubbing back and forth as he's, you know, praying. Meanwhile, I'm standing there in front of my mother with this old guy's hand on my crotch, trying

0:42:00 Thomas: Yeah. Oh

0:42:24 Ania: Not to look her in the eye because both of us are shaking from being about to laugh, because this guy is basically copping a feel in front of my mom, so, you know, and meanwhile I am shaking because I am trying so hard not to laugh. And And he thinks I'm shaking because I'm being, you know, taken, you know, religious ecstasy.

0:42:33 Thomas: My gosh. Wow.

0:42:42 Thomas: Being faith healed? Yeah.

0:42:46 Ania: So I finally, um, I finally get, uh, you know, he's finally done doing his thing. And, you know, he asked me if I'm feeling better and I basically just squeeze out. Yeah. Great. Thanks. And walk out of there. And basically the moment the door was closed, I was down on the ground and I was just dying of laughter. Um, and then later when my mom and I talked about it, We were both just like, so that was interesting. Like, were you trying not to laugh? Because I was trying not to laugh. And yeah.

0:42:57 Thomas: Yeah, cool. Problem solved.

0:43:17 Thomas: So what's the timeline timeline of your, I guess, faith during all this, if you can kind of match up those timelines, because I, it sounds like you're a skeptic, you're an atheist now, uh, but obviously you weren't always. How did that fit in with this picture?

0:43:33 Ania: Well, I mean, I was always a skeptic. I grew up, like I said, Catholic. And whether or not I agree with that sentiment now, Catholics like to believe that they are very pro science and that they're very pro, you know, reality, as opposed to, you know, some other religions and fundamentalist religions where they take the Bible literally, for example.

0:43:34 Thomas: Okay.

0:43:53 Thomas: I know exactly what you mean.

0:43:55 Ania: Yes, so, um, so for all that we were very religious, my father had a PhD in mathematics, uh, and was working with biologists on developing, uh, microscopy that could track the growth of cells. In fact, he was one of, uh, one of the lead people on creating a program used by a lot of, um, um, universities at the time called Incel 1000. Know, and when I went into biomedical sciences, I was highly encouraged to, uh, it was thought that it was a great idea and that I absolutely should. My first year of university, um, I met a lot more people who weren't involved in my faith, but I still went to church regularly. But then when my leg issue started up, I stopped going to church. And at first I felt really guilty about it. But the the longer I didn't go, the more I just didn't feel so bad about it anymore.

0:44:42 Ania: And the more I started sort of examining a lot of different things. I had stopped going to church mainly because it was too painful for me to get there. I just didn't relish the idea of dragging myself out of bed first thing in the morning to take all the buses I'd have to take to get to a nearby church. So I stopped going, and around the same time, because I'd always asked a lot of questions, even about the religion, and my family was mostly indulgent about answering a lot of these questions, had always sort of formulated different ideas about what faith was and what God was. And around this time, I started to sort of move into this area of pagan Christianity, as I like to call it at the time, which was this idea that God wasn't necessarily a distinct being, but more sort of the concept of love or the thing that unified everything.

0:45:33 Ania: And at one point, I even had a goddess string theory idea going there. So, I mean, for all intents and purposes, for a really long time, identified as a sort of religious but not practicing, Catholic but not that kind of person. Part of this was also because I'd become really disillusioned with different things like the way the church treated gay people. And I thought to myself that there's no way that any kind of God that I'd actually believe in would treat people like this.

0:46:02 Thomas: Is the number one reason in terms of people I talk to who left the faith, that is the number one reason cited. Just that they, and it's so interesting because I think that tells us a lot about our kind of, we're a similar age. I think it's, I think, that's our generation. You know, it's like everybody of our age was like, wait a minute, I I think gay people are fine. And then they just left their religion. It's funny. But it's also interesting because one person pointed out that if the church fixes that problem, then a lot of people might go back to it, or a lot of the flow of people away from the church would stop, and we'd find ourselves in a more religious society. It's kind of interesting.

0:46:46 Ania: And I mean, I think it's something that will happen eventually. I mean, another thing that always bothered me was the way the church treated women. I mentioned to you before the show that I was the first female altar server at two of my churches, and part of the reason for that was because Polish Catholicism is still very strict in a lot of ways. I grew up, for the first half of my life, for example, never eating meat on Fridays. Eventually our family kind of relaxed around that, but it was for a long time a strict thing in our household. We went through all the mandatory fast days, so on Ash Wednesday and Good Friday, even if I was at school, I wasn't allowed to eat anything, you know, things of that nature. So our family was was involved in this fairly traditionalist area of the Catholic Church.

0:47:36 Ania: And so being sort of the first female altar server at two of my churches basically showed me that there were things within the church that did need to change. There were attitudes that needed to change, even at a young age. You know, I was in many ways rebelling against the imposed religiosity that I experienced.

So, I mean, this sort of moving away from it and becoming sort of like God is love kind of concept, um, I think a major reason why I said that versus just finally admitting that I don't think I really believed was because I was afraid of of the label atheist. And I mean, it's kind of unfortunate that the first couple of atheists I met were basically very much fitting in with the stereotype of what atheism, of what I was told atheism was, by my family, which was basically people without wonder, people who, you know, didn't really marvel at creation, who couldn't see the magic in a tree, you know, and that kind of thing.

And as a writer, these things were very antithetical to me, um, you know. And so the first couple of people I met who were atheists, um, basically seemed like that, like they seemed like they couldn't take a moment to appreciate the the wonder and the sort of aspects of that. So I believe that that's what atheism was. And then I met my wife, Alyssa, started asking me questions like, okay, so does this string theory God, you know, does he have a consciousness, you know, and

0:49:03 Ania: At first

0:49:02 Thomas: Yeah, start trying to get specifics about your string theory God, and I think it'll fall apart pretty quickly.

0:49:03 Ania: Yeah, And It did, but more specifically it didn't just fall apart. It was more specifically that I realized that as she was asking these questions that it wasn't so much, oh wow, you're right, what I believe is ridiculous. It was more, oh shit, I don't actually believe any of this. And what was even more funny too is that I realized that, and I was a big debater in high school and in university and things like that. And I realized every time I was having one of these arguments about religion or about abortion or about any of these things, that I always had the opposing argument in my head and that my internal conversation was always, please don't let them bring up this point. Please don't make this point because I have no comeback for this.

But they never did, so I figured it wasn't an actual issue. But then when I was forced to actually deal with that point by somebody who was able to have these conversations, I realized that, no, I don't actually believe these things. So for a really long time, Again, again I I still kind of chafed a little bit at the term atheist, so I called myself a secular humanist for a long time, but Alyssa was also not at all what I expected of, you know, somebody who called

0:49:22 Thomas: Right. Right.

0:50:24 Ania: Themselves you know, a militant atheist. Oh,

0:50:24 Thomas: So she, oh, okay. So, she was already an atheist. She was, gotcha.

0:50:26 Ania: Yeah, she she was she was a militant, she was An atheist from the time She was, I think, 12 years old. Um, but she introduced me to Greta Christina, and, uh, PZ Myers and Ophelia Benson and Rebecca Watson and all these people. And I say some of these names now kind of like, uh, twitching a little bit, because they started out as such heroes for me, and I, like, I very much credit some of them with bringing me into atheism. But they're now people that I don't necessarily consider friends the same way I did. Greta Christina absolutely is a great friend, PZ Myers is a is a decent, is a decent dude, um, but there's others who I are.

0:50:29 Thomas: Oh, wow.

0:51:02 Thomas: Fair enough. Yeah, I think listeners probably know my opinions on these people, and it's okay. Your point's taken. And a lot of feminists do the same thing with Richard Dawkins, which is, oh yeah, he inspired me. But, well,

0:51:14 Ania: Richard Dawkins, and the thing is I read his book, and I even agreed with a lot of the stuff that he was saying in The God Delusion. It's not necessarily that his writings on atheism are all universally bad or that he's never had a good idea. It's just that he seems to think that having had one good idea entitles him to speak on things that he has no fucking clue about. Sorry.

0:51:32 Thomas: I was trying to bypass the discussion of this, but that's okay." No, no, that's okay. I was taking your point. People can inspire us.

0:51:35 Ania: Sorry, Yeah, As A Biologist, You should stay stay away from things that aren't his area. So But anyway, so she introduced me to these writers. And the more I read them, especially sort of the feminist atheist writers, the more I identified with it. And then more I realized this is actually what I believe, this is, or not believe as the case may be. And I sort of started realizing where a lot, one of the issues that I was fighting against in society, you know, I was already fighting for women's rights and things like that, fit in better with a secular model than they did with one that had a religious background. And so I started, so I got really involved in movement atheism. I helped plan and help put on Eschaton 2012, which was an atheist conference here in in Ottawa, put on by CFI.

0:52:32 Ania: I participated as an attendee at Women in Secularism. I also went to Sex and Secularity in Montreal, which was actually the first time I met Greta Christina in person, which was great.

0:52:56 Thomas: Well, that's it for part one. I'd like to point out I put some sources that Ania, I gave Ania a chance to give me some links to studies and stuff she referenced. So those will be in the show notes if you're interested in looking into any of that. I'm very curious what my audience has to say about some of the things Ania said. Check out those links. If anyone has comments, as always, the website is great. There's been a lot of comments there recently. Good interaction. I try to comment back most of the time. I can't always, of course, but I don't know what to say. Always need to. There's good listener-to-listener interaction. So I encourage you to go to atheisticallyspeaking.com and comment on the episodes there.

0:53:36 Thomas: I've thanked my new patrons, something I want to make sure to do. So sorry for this, but I got to thank John Warner, Lindsey Osterman, Dave Nichols, Caperton B. Miller, McDrunky, David ApatheticMoron. That's not his real name. I just decided he's an apathetic moron. No, that's his name on Patreon. Wilco, Ronn, John, Brandon Peterson, Jerry woodruff, Frank Fariello, Thomas Assunto, Caperton B. Miller, Ric Stewart, Caperton B. Miller, returning patron. Thanks, Caperton B. Miller. Appreciate it. Ric Stewart, Jason Makhlouta, and Andrew Torrez. Thank you guys very, very much. It means so much that people are supporting this podcast. I think this podcast has really started to find its identity as a podcast that is just not afraid to have all sides of the issues, but in a real way, not just a, let's get everybody on who agrees with me.

0:54:30 Thomas: Case in point, next episode that you will hear, and you will hear right away if you're on patreon.com/atheist pledges little as a dollar show, and you can hear this episode right away. Way. Case in point, we have a very healthy disagreement, and I'm curious to see where you guys fall down on that one. Just quickly I want to thank my top patrons, Inciting Incident Podcast, Kaylee Risers, Imuzinu Jr., Adrian Borschoff, Jonathan Moyet, Jay Alden-Walt, Steve Sigmund, Peter Skelton, Brian Gareford, Dale, Matt Garrett, Ian Rozzano, Lizzie, Samantha, thank you thank you THANK YOU, and I hope you enjoy the early content and I will see you whenever you next hear me. Bye. Bye.