Speaker 1: We should like pluster that on our walls. Yes, everything,
Speaker 1: everyone's got something. Hello, and welcome to stuff mom never
Speaker 1: told you. I'm Annie Reese and today I am joined
Speaker 1: by guest co host Eve's Jeff Coke. You might have
Speaker 1: heard Eves on Afro Punk, which is a great podcast.
Speaker 1: If you haven't checked it out already, you totally should.
Speaker 1: Or on Stuff of Life, also an amazing podcast that
Speaker 1: is not doing new episodes anymore, but you can go
Speaker 1: and find the old archive and check that out. And
Speaker 1: Eves and I we have worked together for a while
Speaker 1: and we've been trying to make this happen for a while,
Speaker 1: trying to get on the same get on the same podcast.
Speaker 1: Hives are so excited to have you. We've been trying
Speaker 1: to have you on the show for a long time. Well,
Speaker 1: I'm really excited to finally be here. Yes, um, yeah
Speaker 1: I've been. I've been hanging around, creeping and lurking around
Speaker 1: Seeky for a while, just looking at the podcast, looking
Speaker 1: in the window, just like, hey, when you're gonna let
Speaker 1: me in? When are you going in your head? Rise up? Yeah,
Speaker 1: We've we've been trying for a while, and scheduling is
Speaker 1: always an interesting thing. With so many busy people in
Speaker 1: our office, but we are thrilled to have you here today,
Speaker 1: and um, you pitched me a topic that I honestly
Speaker 1: didn't know much about what we're talking about today. Do
Speaker 1: you want to talk about what we're talking about and
Speaker 1: why you want to talk about it? Yeah? So what
Speaker 1: I want you to talk about today and what we
Speaker 1: are going to talk about today is working women and
Speaker 1: invisible illnesses, which is a long and very specific thing
Speaker 1: because it comes at the intersection of many different issues,
Speaker 1: I think, but I guess the reason that I wanted
Speaker 1: to talk about it is because we really touch on
Speaker 1: a lot of these issues. Like we talked about people
Speaker 1: with disabilities, we talk about women's issues, we talk about illness,
Speaker 1: chronic illness, UM. But I think framing it through a
Speaker 1: feminist lens and really amplifying the fact that there are
Speaker 1: specific issues that women with chronic illnesses and invisible disabilities face,
Speaker 1: um when they're in the workplace. And also there are
Speaker 1: just a ton of people who who have chronic illnesses
Speaker 1: that you don't know about and you would never know about.
Speaker 1: And I think people think about disability and a really
Speaker 1: in a way where they there's a default person that
Speaker 1: they think about when they think about disability, and that's
Speaker 1: just not the case. So I think it's just great
Speaker 1: too to really bring that to light. Yeah, I'm I'm
Speaker 1: so glad that you you pitched this because is like
Speaker 1: I said, I didn't know too much about it, and
Speaker 1: it it is something that I don't think we talked
Speaker 1: about at all when we did the episode with Annie
Speaker 1: Cigara on our episode about overcoming disability and kind of
Speaker 1: the problematic phrase that that is. We got a lot
Speaker 1: of response back to it, a lot of stories and
Speaker 1: personal anecdotes, and I was telling you I learned a
Speaker 1: lot from that episode as well, and it shocked me
Speaker 1: how people feel comfortable coming up two people with disabilities
Speaker 1: and pointing out although you were using that wheelchair a
Speaker 1: moment ago, so I guess you're you're faking or just
Speaker 1: always questioning ridiculous. Yeah. I think the thing about it
Speaker 1: too is that you know and thinking about not being
Speaker 1: educated on it, Like that's really easy because people have
Speaker 1: such a range of disabilities. There are so many different
Speaker 1: things that people are dealing with when it comes to conditions,
Speaker 1: so you can't really know everything. Like we're going to
Speaker 1: be continually learning about how people deal with their issues
Speaker 1: and how they face their own issues and how they
Speaker 1: want to talk about it themselves, which is, you know,
Speaker 1: the most important thing, UM, to listen to the people
Speaker 1: who are actually going these things. But I think also
Speaker 1: we're in a really you and I are in a
Speaker 1: really interesting position because we we're in the workplace right now.
Speaker 1: So this is kind of meta because we're like, you know,
Speaker 1: we're able to be in our workplace and talk about
Speaker 1: this kind of thing, and at the same time we're
Speaker 1: saying these things are not talked about in the workplace enough.
Speaker 1: I think that applies in our case as well, like
Speaker 1: we don't talk about it enough here, yet we're here
Speaker 1: right now talking about it, which I think is a
Speaker 1: good thing. Yeah, I completely agree, And it does tie
Speaker 1: into a lot of topics that we've discussed before. UM,
Speaker 1: emotional labor is a big one. And you turn me
Speaker 1: onto this, Um these badges, please offer me a seat badges.
Speaker 1: I've never heard of that or seen that before, but
Speaker 1: it's it's a badge that you would wear it, I
Speaker 1: would say, really helpful on public transportation. It's just a
Speaker 1: way of indicating that maybe you can't see what I'm
Speaker 1: dealing with but I could really use a seat, right,
Speaker 1: And I think that that's just a really good example
Speaker 1: of how people deal with their illnesses in a very
Speaker 1: everyday thing, because I think these badges were in London
Speaker 1: is where they were instituted, and you don't have to
Speaker 1: pronounce your illness when you sign up to get the
Speaker 1: badge or anything like that, so there's nothing like that
Speaker 1: that's required of a person to get it, and they
Speaker 1: have these guidelines on how other people should be treated
Speaker 1: when they're on public transportation. But um, yeah, it's a
Speaker 1: really good example of how people face these things like
Speaker 1: every day in moments where it may be very comfortable
Speaker 1: for you if you're a person who's not affected by
Speaker 1: your disabilities, or you don't have any disabilities that would
Speaker 1: disrupt the way that you take public transportation. It's it's
Speaker 1: a it's a moment where you can say, oh, like,
Speaker 1: there are people who have different lives than I do, um,
Speaker 1: and maybe they're not in a wheelchair and they don't
Speaker 1: need to say or maybe they're not elderly um and
Speaker 1: need to sit. But there may be another reason that
Speaker 1: a person should really have a seat to make the
Speaker 1: experience of commuting from one place to another, which is
Speaker 1: such a thing that you should find comfort in, Like
Speaker 1: you can't. We're in Atlanta, so can be Oh yes, yeah, So,
Speaker 1: I guess the thing about this topic is that there
Speaker 1: are so many there's like it's like a nesting doll.
Speaker 1: So there's this large category of like people with disabilities,
Speaker 1: and there's women with disabilities, and then there's women with
Speaker 1: disabilities in the workplace, and it's this like intersection of identity.
Speaker 1: So there's like this multiple discrimination that's going on there.
Speaker 1: So in thinking about women with disabilities in the workplace,
Speaker 1: you can break it down in them even further than
Speaker 1: that to women of color with disabilities in the workplace
Speaker 1: and queer women with disabilities in the workplace. And so
Speaker 1: beyond the sexism and the misogyny and the able ism
Speaker 1: that may happen in the workplace because of those identities,
Speaker 1: you can also have a racism that happens as a
Speaker 1: part of it. Um. So yeah, there are a ton
Speaker 1: of challenges, and I know that we won't be able
Speaker 1: to touch all of them. That would be exhaustive. So yeah, um,
Speaker 1: I guess the first thing I think of when I
Speaker 1: think of invisible illness um is the term itself. So obviously,
Speaker 1: like words should be something that we're thinking of all
Speaker 1: the time when it comes to issues like this, and
Speaker 1: it's something that changes all the time. So an invisible
Speaker 1: illness or disability specifically, it's something that's a physical, a mental,
Speaker 1: or neurological condition that limits a person's movement, senses, or activities.
Speaker 1: And it's one that's visible, which means that you can't
Speaker 1: see it right off the bat. And and like clearly
Speaker 1: that's not something that a person with an invisible quote
Speaker 1: unquote illness or disability would feel themselves, because they're the
Speaker 1: ones who are going through it. So it's something that
Speaker 1: is you know, it's a power dynamic because it's really
Speaker 1: from the perspective of the person who doesn't have the
Speaker 1: disability or illness. Yeah, I'm glad you you brought that up,
Speaker 1: because it is important that we think about words. I've
Speaker 1: I love words. I just had a conversation about this,
Speaker 1: like literally an hour ago about we should really re
Speaker 1: examine a lot of words in our language and where
Speaker 1: they come from because the past can be offensive. So
Speaker 1: I really appreciate that you you brought that up. Yeah,
Speaker 1: and I am guilty, you know, I have to check
Speaker 1: myself sometimes because you and I talked about yesterday, how
Speaker 1: something that I realized that it's like, oh, there's a
Speaker 1: blind spot here, just like okay, right there, whereas aren't
Speaker 1: important and there's just arrange when it comes to like
Speaker 1: how much a disability affects a person and how it
Speaker 1: affects their performance and their day to day activities. So
Speaker 1: I think the most important thing is not to assume.
Speaker 1: But I would say not to assume in the direction
Speaker 1: where it's like, don't assume that they are not disabled.
Speaker 1: But I think it's more so okay to assume that
Speaker 1: a person does have a disability, because just the sheer numbers,
Speaker 1: like a large percentage of people in the world have disabilities. Yeah.
Speaker 1: According to the CDC, twenty seven million women in the
Speaker 1: US have disabilities, and among women Native Americans and African Americans,
Speaker 1: they have the highest percentage of those of those disabilities. Yeah,
Speaker 1: and it's like, obviously a lot of those people also
Speaker 1: are in the workplace. So we're going when we're in
Speaker 1: the workplace, we're going to need to address these issues
Speaker 1: to make a more equitable workplace, in a workplace that's
Speaker 1: safer for everybody. Yeah, because isn't that ideal? Isn't that
Speaker 1: what we want? Yeah? And I'll also add that the
Speaker 1: notion itself of invisible disability can be a little problematic
Speaker 1: because it operates like under this assumption that the disabled
Speaker 1: body has to be like hyper visible, like you have
Speaker 1: to be you have to have disabled on your forehead
Speaker 1: and read letters or something like that, And it's the
Speaker 1: responsibility of people with disabilities to declare themselves as such,
Speaker 1: which is not the case. Um, that burden shouldn't be
Speaker 1: on people with disabilities. And it's kind of like this
Speaker 1: thing where people with invisible disabilities are like twice removed
Speaker 1: because they're outside of this norm that is already outside
Speaker 1: of a norm like people's disabilities are already mothered. I
Speaker 1: will say using the term invisible illness is still important
Speaker 1: because it's still something that's not addressed enough and it's
Speaker 1: not talked about enough, So it's kind of necessary to
Speaker 1: still use it so we remember and recognize and acknowledge
Speaker 1: the fact that there are people who have disabilities that
Speaker 1: we necessarily wouldn't assume based on our perceived notions of
Speaker 1: what a yeah, person with disabilities should look like. Yeah,
Speaker 1: And um, like you're saying, don't assume. And I remember
Speaker 1: when I first went to when I went to college,
Speaker 1: and I had all these new friends and we were
Speaker 1: learning about each other, and I just it was constantly
Speaker 1: falling into that trap of comparing myself to my friends, right,
Speaker 1: and they're what I saw is perfect life, and I
Speaker 1: in every instance it was one of the best life
Speaker 1: lessons I ever got. I would learn that they were
Speaker 1: dealing with all of this stuff that I didn't know about.
Speaker 1: And everyone's got something, right, So I think that's a
Speaker 1: great thing to keep in mind. Yeah, we should like
Speaker 1: plashter that on our walls. Yes, everything, everyone's got something.
Speaker 1: And then underneath is my other thing. Something always comes
Speaker 1: up because it does, it's true, right, um. And if
Speaker 1: we're talking about invisible disabilities, some some examples are things
Speaker 1: like chronic pain or fatigue, HIV, endometriosis, epilepsy, narcolepsy, PTSD,
Speaker 1: irritable bowel syndrome, being deaf, are hard of hearing, and
Speaker 1: lyme disease. And fifty four million women have multiple chronic conditions,
Speaker 1: many of which would not be considered disabilities because they
Speaker 1: don't impair day to day activities. But that's a lot
Speaker 1: of women dealing with in illnesses and chronic conditions every day,
Speaker 1: and a lot of those women, yes, are in the workplace. Yeah.
Speaker 1: And even though we are super familiar with all of
Speaker 1: those things you just name, and we can name a
Speaker 1: ton more illnesses to that really affect people and you
Speaker 1: might not necessarily see it. Um, there's not much data
Speaker 1: on how women in the workplace who have disabilities are affected.
Speaker 1: And it's like that intersection is it just doesn't exist.
Speaker 1: It's and even when you break it down further, like
Speaker 1: trans women, it's just it's not a ton of it
Speaker 1: out there. And to add to that, it's like women
Speaker 1: are left out of the policies and legislation that have
Speaker 1: to do with disabilities, Like there may be there's it
Speaker 1: on women that are included in these in laws, and
Speaker 1: there's also data on disabilities and it's included in laws,
Speaker 1: but just kind of thinking about the two together, it's
Speaker 1: not super common. And so you know, women with disabilities
Speaker 1: are all so often left out of the mainstream disability
Speaker 1: and women's movements. So it's just this a challenge, um
Speaker 1: to dig up stuff. One. Yeah, women with invisible illnesses
Speaker 1: in the workplace. Yeah, And I found so estimates up
Speaker 1: to of illnesses are invisible. And I've talked before on
Speaker 1: this show about UM, some of the things I'm dealing with.
Speaker 1: I actually didn't know that they qualified until I started
Speaker 1: doing the research. Yep, that's the point. Yeah. Um, I've
Speaker 1: been told by one more than one person that my
Speaker 1: greatest skill is acting like everything's okay. I'm very cool
Speaker 1: about that. Where you where are you upset that they
Speaker 1: said that to you? Or are you like You're probably right?
Speaker 1: I was kind of. It was one of those weird
Speaker 1: things where it almost felt like a loss, like I
Speaker 1: had been pretending so well and for them to realize, like,
Speaker 1: oh no, you are dealing with these other things. And
Speaker 1: that's something we're going to talk about. Two is the
Speaker 1: feeling that we've set up and shown time and time
Speaker 1: again in our media and in our society of failure.
Speaker 1: I think are being weak, which I have definitely felt. UM.
Speaker 1: So I have a few and when I've talked about
Speaker 1: UM chronic PTSD on here, I have migraines UM which
Speaker 1: I again I didn't know, chronic fatigue one super bad ear,
Speaker 1: and an eating disorder that comes it like comes and goes.
Speaker 1: But I feel ashamed when I tell someone I have
Speaker 1: them honestly, and I feel like, um, they won't believe
Speaker 1: me that, They'll think I'm weaker, a faker. And I've
Speaker 1: more than once wished I had some kind of card
Speaker 1: I could just show someone from a doctor that says, yes, right,
Speaker 1: she's she needs to legitimateze what you're saying, right, And um,
Speaker 1: I've had on the other side of that, I've had
Speaker 1: a doctor tell me, well, you can't be in that
Speaker 1: much pain because your face is totally fine, or once
Speaker 1: you're laughing. But I feel like I've been socialized not
Speaker 1: to show weakness. Also, I laughed generally, and it's like
Speaker 1: my response to pain. It's a weird thing, but some
Speaker 1: people do that. I wouldn't say that's weird. It's probably
Speaker 1: more common than you're making it to be right now,
Speaker 1: I think so, I think that's a pretty like it's
Speaker 1: like when you're scared and you laugh after just a reaction.
Speaker 1: And then on the other other side of the coin,
Speaker 1: I've had a doctor tell me to quit being such
Speaker 1: a baby when I did display some distress. What's wrong
Speaker 1: with being a baby? First of all? So I like, yeah,
Speaker 1: you don't like babies. I should have turned it around
Speaker 1: on it. I like that, I'm going to remember that
Speaker 1: um in my house. I've talked about before tears very much,
Speaker 1: one where you did not complain or wine, And yeah,
Speaker 1: that that story that we see that we talked about
Speaker 1: in our other episode around disability, the failure of not
Speaker 1: getting better, because that scene is like success, right, but
Speaker 1: that is a problematic, very problematic arc in a way
Speaker 1: to look at things. But it's also just damaging and incorrect,
Speaker 1: like you're not going to get better and better or
Speaker 1: like get through it. Feel like that's something a lot
Speaker 1: of people say when you tell people that you have
Speaker 1: a condition, like, oh, you'll get through it, You'll get better,
Speaker 1: And I can get that, like how that's reassuring, But
Speaker 1: also the reality is stuff is chronic. A lot of
Speaker 1: has and you just have to live your life as
Speaker 1: you see fit while dealing with the issue. Yeah, and
Speaker 1: I've definitely seen when I've told people before in the
Speaker 1: workplace that immediately like what does this mean for me? Look?
Speaker 1: And then the sort of implication like aren't you gonna
Speaker 1: get past it? When is the end date for this?
Speaker 1: How long am I going to have to put up with?
Speaker 1: Humans are always so worried about time. I like how
Speaker 1: you said that. That makes it sound like you're you're
Speaker 1: like a goddess. Oh you mortals, You're foolish time constructs.
Speaker 1: I think I've revealed too much about myself. Yeah, I'm
Speaker 1: very cheeks, very cheese m um. Yeah. And to be clear,
Speaker 1: having a disability is an obstacle to getting work in
Speaker 1: the first place, right, Yeah about eight and tim people
Speaker 1: with disabilities in US don't have jobs even though they
Speaker 1: desire to have jobs. And even then, men with disabilities
Speaker 1: are more likely to have a job than women with disabilities,
Speaker 1: which likely contributes to higher poverty rights and women with
Speaker 1: disabilities and disability and poverty are like, there's correlation there.
Speaker 1: In general and globally, unemployment rights have the highest among
Speaker 1: women with disabilities. The un even estimates that seventy women
Speaker 1: with disabilities are unemployed, and women with disabilities who are
Speaker 1: employed often earned less than men and women without disabilities.
Speaker 1: And once women with disabilities do have jobs, they face
Speaker 1: stuff like pay gaps, unequal hiring and promotion standards, and
Speaker 1: you know, all those systemic issues that go along with
Speaker 1: having more than one marginal identity. Yeah, all of those things,
Speaker 1: according to Hilda, which is the Household Income and Labor
Speaker 1: Dynamics Australia Data UM. Nearly half of women dealing with
Speaker 1: chronic illness do not have access to paid holiday leave,
Speaker 1: compared to thirty seven percent of men. About one third
Speaker 1: of women with chronic illness surveyed indicated they wanted to
Speaker 1: work more hours, which seems to suggest that flexible schedules
Speaker 1: around their illness are hard to come by. The article
Speaker 1: also talked about the socially acceptable role of a sick
Speaker 1: person and the manager's desire to do the quote right
Speaker 1: thing by offering only a lighter so annoying yes, heavy
Speaker 1: sign d assumptions, assumptions quit doing it. Women with chronic
Speaker 1: illness also expressed dissatisfaction with advancement opportunities and reported feelings
Speaker 1: that they were not taken seriously when it came to promotions.
Speaker 1: They were also more likely to be underpaid a ton
Speaker 1: of crappy stuff yeah right, um, and a lot of
Speaker 1: services for people with disabilities, like we have to remember
Speaker 1: we're made with white men in mind, like thinking of
Speaker 1: about the term disability in the first place. That's something
Speaker 1: that's really centered around law. Um. And they only accommodate
Speaker 1: those with physical invisible disabilities, not as if people with
Speaker 1: visible disabilities aren't also important, including but really focusing on that.
Speaker 1: Whereas illnesses and disabilities associated with women have a lot
Speaker 1: of the time been written off as trivial and self inflicted. Yeah, right, hysterics,
Speaker 1: you know, the hysterics. And then so the need is
Speaker 1: to raise the voices of those who are affective about
Speaker 1: illnesses and disabilities that we can't see, and for more
Speaker 1: equitable and safe workplaces that recognize and adjust the needs
Speaker 1: of women with invisible conditions. UM there's this book called
Speaker 1: Women with Visible and Invisible Disabilities that really um centers
Speaker 1: the experience of women that have disabilities. Several years old
Speaker 1: at this point, but there was a phrase that I
Speaker 1: really like the way they put which is that in
Speaker 1: a healthy, supportive society, barriers are removed and opportunities for
Speaker 1: all people are provided without question. And like that's cut,
Speaker 1: that's obvious, but it's just like that's really important to
Speaker 1: highlight because it's like, yeah, people have experiences that you
Speaker 1: don't know about and you've never had, and they also
Speaker 1: deserve to work in an environment that is supportive to them.
Speaker 1: So the barriers that are created against women with invisible
Speaker 1: illnesses when it comes to employment, only served to maintain
Speaker 1: this cast system we have set up. Yeah, and I
Speaker 1: think a lot of it has to do with a
Speaker 1: and we're gonna talk about this a little later. Um,
Speaker 1: A lack of empathy and an unwillingness to think about
Speaker 1: any experience outside of your own. Yeah. Um, we need
Speaker 1: to talk about empathy more, and we need to talk
Speaker 1: about it more and not framing it as this thing
Speaker 1: that's like you should keep on the hush hush, like
Speaker 1: it's okay that for us to talk about things like that,
Speaker 1: you know what I mean? Um, I just wanted to
Speaker 1: call out a couple of anecdotes that people have had
Speaker 1: because I feel like it's really important to know that
Speaker 1: people are dealing, especially since there's not that much data
Speaker 1: out there on the subject, that people deal with this
Speaker 1: in real life, and we should listen to people. It's
Speaker 1: not always about data. The experiences that people themselves have
Speaker 1: it is very important as well. So there was one
Speaker 1: MPR article from that told the story of a woman
Speaker 1: named Carly Metosh Are Carly Medosh I'm not sure how
Speaker 1: to pronounce that one. Hi, Carly who's had Crohn's disease.
Speaker 1: Since she was thirteen and had recently been diagnosed with
Speaker 1: faber on mayalgia, and that's something that could be considered
Speaker 1: a visible illness. And we'll talk about fiber miles a
Speaker 1: little bit later too, because it is a women's illness,
Speaker 1: but they has a lot of symptoms like fatigue, UM
Speaker 1: and chronic pain that go along with it, and a
Speaker 1: lot of people debate over whether it's legiti its medical
Speaker 1: legitimacy essentially UM. So she said she would sometimes lay
Speaker 1: on the bathroom for thinking, am I going to die?
Speaker 1: Should I jump out in front of traffic so that
Speaker 1: I can die? And she said that everyday task are
Speaker 1: difficult for her, even though nobody would be able to
Speaker 1: tell from the outside looking in UM. She's had people
Speaker 1: judge her first stuff like using a handicapped parking tag,
Speaker 1: and has had trouble getting accommodations from a potential employer
Speaker 1: the story set. Another example is from the book Invisible,
Speaker 1: when Michelle lent her She talks about how she told
Speaker 1: her boss at a publication she was diagnosed with cancer,
Speaker 1: and her boss had confronted her demanding to know why
Speaker 1: she missed her second day of work because yes, she
Speaker 1: found this out on her first day of work, she
Speaker 1: disguised as she felt like she was stammering in the
Speaker 1: face of zero empathy, and apologized for the timing of
Speaker 1: the disclosure. In response, her boss told her that she
Speaker 1: needed to be there working in the morning and to quote,
Speaker 1: leave her cancer at the door, And there was no
Speaker 1: HR department or person at that magazine for hersh to
Speaker 1: turn to, which is a thing for a lot of people.
Speaker 1: Unlike us, we have a HR department that we can
Speaker 1: turn to, but a lot of people have HR, don't
Speaker 1: have HR departments at all, or the ones that they
Speaker 1: do are ineffective or are a problem. They're the ones
Speaker 1: who say things like leave your cancer at the door. Yeah, yeah,
Speaker 1: I know personally, um so from people Yeah, not trying
Speaker 1: to make this yeah, um so. I feel like there
Speaker 1: are a lot of people who have been in situations
Speaker 1: like the author, like Michelle and Hirsch have been in
Speaker 1: as well. Yeah. And one thing before we move on
Speaker 1: to the next example, I wanted to include that she
Speaker 1: touched on in her book a little bit is the
Speaker 1: strain it puts on relationships. Um from her book quote,
Speaker 1: the woman gets a certain type of health issue, the
Speaker 1: marriage maybe six to ten times more likely to end divorce,
Speaker 1: and she uses the example of New Gingrich, who has
Speaker 1: left two wives with illness, one with cancer, one with MSS.
Speaker 1: And I am my personal experience, I've only reached the
Speaker 1: point of telling someone in a relationship once about what
Speaker 1: I was dealing with, and I remember distinctly feeling like
Speaker 1: I was giving him a weapon to hurt me with.
Speaker 1: It was a very scary feeling, and I suppose that's
Speaker 1: what vulnerability is in general. And I felt like I
Speaker 1: was giving up a card and if we ever broke
Speaker 1: up or even like state in the relationship, that it
Speaker 1: could be weaponized against me. And the the work of
Speaker 1: hiding it from someone you spent so much of your
Speaker 1: time with it was exhausting and it hurt our relationship,
Speaker 1: and it was definitely one of the reasons our relationship ended.
Speaker 1: So I think that's another thing to talk about too,
Speaker 1: is I remember I've gotten very in my dating life.
Speaker 1: I've become very um first date, Look, I'm not looking
Speaker 1: for this. And I remember when I first started dating
Speaker 1: this person, I told him in the big getting there
Speaker 1: are things that that you don't know and that I
Speaker 1: really struggle with, and they're going to impact our relationship,
Speaker 1: and he was so optimistic about it, and I don't
Speaker 1: blame him for it, but there was that sense of
Speaker 1: we'll get past it, we'll get over it, and I
Speaker 1: was just in the back of my head thinking kind
Speaker 1: of cynically, no, we won't. Yeah, I don't know why.
Speaker 1: When you said you you tell a person that this
Speaker 1: is how it is, I just imagine you, like smoking
Speaker 1: a cigarette, like listening here, like I kind of love it. Honestly,
Speaker 1: this one guy a couple of weeks ago, he definitely
Speaker 1: was not expecting that. Um, but I think it's good
Speaker 1: to get it out here. Not that I am in
Speaker 1: any rush for any kind of thing, but I find
Speaker 1: that people around my age are and I just don't
Speaker 1: want to waste any one time. You know, I fail you.
Speaker 1: But moving on from my own personal terrible dating skills,
Speaker 1: you have another example, Yeah, I do so. In the
Speaker 1: book Women and Disabilities that I mentioned earlier, there is
Speaker 1: an example of a woman named Caroline Humphrey, and they
Speaker 1: said she was a really great employee, but that she
Speaker 1: had a history of tardiness and absentee is um because
Speaker 1: she had grooming and dressing rituals that took a really
Speaker 1: long time, sometimes all day, and she was a medic
Speaker 1: culture inscrib and she suited the hospital that fired her,
Speaker 1: claiming that the obsesso trade that drove her to have
Speaker 1: these really long preparation tims. She wasn't accommodated for it
Speaker 1: as was required and is required under the A d A,
Speaker 1: which is the Americans with Disabilities Act, which will get
Speaker 1: into a little bit more later, And a federal judge
Speaker 1: threw that out of court, but then a three judge
Speaker 1: panel of the nine US Circuit Court of Appeals decided
Speaker 1: in two thousand one that she had a good point
Speaker 1: and they sent our case back to trial. It kind
Speaker 1: of reminds me of I can't believe I'm bringing this
Speaker 1: up again Scrubs For some reason. I've been making a
Speaker 1: lot of references to Scrubs lately, and I'm kind of
Speaker 1: surprised by it. There's an episode where one of the doctors,
Speaker 1: I think he's a guest rotating doctor played by Mike J. Fox,
Speaker 1: had obsessive compulsive disorder, and it just I think at
Speaker 1: the end, it was a very poignant moment where it
Speaker 1: showed how all of these hoops he was going through
Speaker 1: and all the time he was having to a lot
Speaker 1: to kind of he wasn't hiding it, but he was
Speaker 1: trying to make it not impact anyone else. You trying
Speaker 1: to manage it, Yeah, but on other people's expectations. Yes, yes,
Speaker 1: And just seeing his frustration and painting around that, um,
Speaker 1: it stuck with me clearly because that show has not
Speaker 1: been on the air from the time. I imagine you
Speaker 1: have a treasure trove of like random moments and TV
Speaker 1: and film in your head. I do. I do that.
Speaker 1: That is what my brain definitely hung on too, of
Speaker 1: all the things that could have And we have some
Speaker 1: some stats about how workplaces are so terrible at addressing
Speaker 1: invisible conditions, especially for women. But first we're going to
Speaker 1: pause for a quick break for word from our sponsor,
Speaker 1: and we're back. Thank you sponsor. So there was this
Speaker 1: survey that the Working Mother Research Institute did that show
Speaker 1: their employees are pretty crappy when it comes to addressing
Speaker 1: disabilities that they can't see as opposed to visible ones.
Speaker 1: And the study was one that broke things down into oh,
Speaker 1: this is what happens to women with disabilities and women
Speaker 1: with invisible illnesses A little bit like there was more
Speaker 1: that you know, could have been done when specifically thinking
Speaker 1: about the intersection between women and invisible illnesses. But I
Speaker 1: found that crappiness starts even before someone is highed, like
Speaker 1: during the recruiting process. Generally, people with invisibility said they
Speaker 1: were less likely to have accommodations in place when they
Speaker 1: started their jobs, and we're more likely to have their
Speaker 1: requests for accommodations rejected than people with visible disabilities, and
Speaker 1: obviously people need accommodations. UM and of women with disabilities
Speaker 1: reported being told their accommodations weren't necessary versus just eighteen
Speaker 1: of men. Yeah, so that's a pretty significant difference. Yeah.
Speaker 1: And the survey also found that people with invisible disabilities
Speaker 1: are most frequently turned down on their request for flexible
Speaker 1: work schedules, which we brought up earlier UM and schedule modifications,
Speaker 1: of workspace modifications, things that are in a lot of workplaces,
Speaker 1: easy to work with with a person on and as
Speaker 1: compared to people with visible disabilities, people with invisible disabilities
Speaker 1: report being less satisfied on the job, having greater difficulty
Speaker 1: balancing work and personal life demands, and being less optimistic
Speaker 1: about their ability to advance on work, which we also
Speaker 1: brought up earlier. Yeah, and we are focusing a lot
Speaker 1: on the US here, but I do like bringing in
Speaker 1: data from other countries where we can, so I think
Speaker 1: it just captures more of the story. And the study
Speaker 1: I was mentioning earlier showed the same thing in Australia. Um.
Speaker 1: And I did want to bring up the media because
Speaker 1: again this whole brain. We have started to see more
Speaker 1: on a portrayals of women with invisible illness in our media,
Speaker 1: but for a long time, sick, young attractive women were
Speaker 1: treated as a narrative device in a story about men
Speaker 1: learning to really live life, get out there and appreciate it,
Speaker 1: because obviously all things are in service to men, right.
Speaker 1: And I haven't seen most of those movies, but I
Speaker 1: knew exactly what particular genre they were talking about when
Speaker 1: I read read about that. Um And according to a report,
Speaker 1: only two point four of films featured a character with
Speaker 1: disabilities across the board, which is very low and unrepresentative. Yeah. Yeah,
Speaker 1: and I would I would hazard a guess that a
Speaker 1: lot of them are inaccurate and possibly offensive. Yeah. And
Speaker 1: I would guess too that a lot, well a lot
Speaker 1: has changed when it comes to mental illness. Yeah, specifically, right, Like,
Speaker 1: that's a huge category. Obviously there are a lot of
Speaker 1: things under that umbrella. But oh, you can't see it
Speaker 1: all the time, you know. So a lot has changed
Speaker 1: about the way people per trade mental illness positively, Like
Speaker 1: obviously we have a long way to go. Yeah, but yeah,
Speaker 1: so the law, do you want to get into it? Yeah?
Speaker 1: The law Okay, I'm not gonna um. Like, as you
Speaker 1: were saying, these things applied globally, but um, workplaces are
Speaker 1: very different all over the world, and regulation in workplaces
Speaker 1: are very different all over the world, and even in
Speaker 1: the United States. So long, different industries have different policies. Um,
Speaker 1: thank god, we're no longer employing children illegally. We've come
Speaker 1: aways in the way that we've we've done things when
Speaker 1: it comes to employment in in the United States. And
Speaker 1: obviously there's stuff like fights of the minimum wage. But
Speaker 1: one of the things that has been good over the past,
Speaker 1: you know, a few decades, is that is the Americans
Speaker 1: with Disabilities Act, So and do that and a amendments
Speaker 1: to the a d A brought in the definition of
Speaker 1: what a disability is. So the point of the a
Speaker 1: d A is to prohibit discrimination against people with disabilities
Speaker 1: and ensure that people with disabilities have the same employment
Speaker 1: opportunities as those without disabilities. So it requires employers to
Speaker 1: provide quote reasonable accommodations two people with disabilities. And I know,
Speaker 1: like it gets really darkeny sometimes, like you're probably asking
Speaker 1: what are reasonable accommodation It sounds like a lot of
Speaker 1: syllables um, but then include things like allowing for a
Speaker 1: self paced workload, flexible work hours, modifying job responsibilities, and
Speaker 1: allowing for leave paid and unpaid during periods of hospitalization,
Speaker 1: assigning and understanding supervisor, getting to empathy there a little
Speaker 1: bit um, modifying work hours to attend appointments like ones
Speaker 1: with a psychiatrist, providing easy access to supervision and support
Speaker 1: in the workplace, and providing frequent guidance about job performance.
Speaker 1: So the A d A doesn't explicitly use the words
Speaker 1: invisible conditions, but it does still provide protections for people
Speaker 1: with invisible conditions, as it protects people with a quote
Speaker 1: physical or mental impairment that substantially limits one are more
Speaker 1: major life activities of such individual. And I think and
Speaker 1: thinking about that, and like you said, you didn't even
Speaker 1: know until like you read a list that you could
Speaker 1: be considered into something like this. So I think a
Speaker 1: lot of people don't recognize and don't know when they're
Speaker 1: in the workplace when they can be protected because they
Speaker 1: don't know that they're under the protections of the the AD.
Speaker 1: And there are a lot of caveats and different situations,
Speaker 1: like it comes on a case by case spaces a
Speaker 1: lot of the time. And but yeah, it's important to
Speaker 1: know first of all, yes, I can be protected and
Speaker 1: I might be protected under the AD. Yeah, that's important.
Speaker 1: Step one. Knowledge is power. I I will also say that, um,
Speaker 1: we are really lucky in our office that we have
Speaker 1: a lot of those things. We have flexible work hours
Speaker 1: and we have a pretty good work from home policy
Speaker 1: and that is one of the things I am most
Speaker 1: thankful for at this job. Yeah, and because that's been
Speaker 1: the policy, I don't know what it was like before
Speaker 1: I was here, imagine it was a lot of the same,
Speaker 1: but that's been a policy since I've been here. So
Speaker 1: I feel like that's definitely a privilege because a lot
Speaker 1: of the people that's not there, so they have to
Speaker 1: be the one to create that change. Yeah, so the
Speaker 1: burden kind of becomes on the person who the burdens
Speaker 1: are already on to to create change within a workplace.
Speaker 1: So yeah, we're definitely lucky. Yeah. I if I went
Speaker 1: to a job after this, I feel like I'm spoiled now.
Speaker 1: I wouldn't know what to do. Yeah, I have to
Speaker 1: be here from what hours? What is clocking in? Exactly? Yeah.
Speaker 1: So the A d A has created a lot of
Speaker 1: meaningful change in society. But just because it exists and
Speaker 1: provides protections for a lot of people doesn't mean that
Speaker 1: people with disabilities still don't face discrimination. In practice, it's
Speaker 1: still hard for people with invisible disabilities to receive protection
Speaker 1: from discrimination and really feel comfortable disclosing. Um they are
Speaker 1: conditioned to their employer. So legislation, like you know, things
Speaker 1: like the A d A is important, but so is
Speaker 1: changing the culture around how we treat and think about
Speaker 1: people who have chronic illnesses and disabilities in the workplace. Yeah,
Speaker 1: and that's something that's come up several times on the show,
Speaker 1: is our conversation around mental health is a great example
Speaker 1: has been It's been so stigmatizing and we just haven't
Speaker 1: talked about it, and it's something at work you you
Speaker 1: just kept to yourself, And I think that is changing.
Speaker 1: I think it's changing very slowly, but it is changing.
Speaker 1: You know, some type want a revolution. We can't always
Speaker 1: get a revolution, right, not always a good example migraines,
Speaker 1: which is one again. I've had migraines since forever and
Speaker 1: I didn't know that they would fall under this, and um,
Speaker 1: they are very painful. And I remember as a kid
Speaker 1: when I would get them, people wouldn't believe me and
Speaker 1: they thought he was a kid just trying to get
Speaker 1: out of school. And then you would have a kid
Speaker 1: who is on the floor and vomiting, and I would
Speaker 1: always kind of laugh later because I told you he
Speaker 1: did not believe me. But it is a lot more
Speaker 1: women suffer from migraines than men, at least I spose.
Speaker 1: The numbers show out of the thirty eight million Americans
Speaker 1: estimated suffer from migraines, seventy three are women. What that
Speaker 1: is a lot. I have a lot of friends, a
Speaker 1: lot of female friends that suffer from migraines, and they
Speaker 1: can cause visual issues, dizzeyeness, vomiting, intense pain, and other
Speaker 1: serious symptoms when untreated. Migraines can can make people miss work,
Speaker 1: oh for sure. And women may experience migraines more frequently
Speaker 1: because of hormonal changes. Because of misperceptions about the severity
Speaker 1: of migraines and their conflation with common headaches, many women
Speaker 1: face discrimination in the workplace when they get migraines. If
Speaker 1: a woman has to miss work or a meeting because
Speaker 1: of a migraine, and employer may assume she is irresponsible, inconsiderate,
Speaker 1: and unable to plan effectively. But I'm just selling you
Speaker 1: straight up as someone who has them. You're You're lucky
Speaker 1: to be able to move like you're You're probably in
Speaker 1: a dark room just counting down. I always try to
Speaker 1: fall asleep first. That's my fall asleep for what do
Speaker 1: you mean about fall asleep first, Because I get I
Speaker 1: get like a warning. I know it's coming, and so
Speaker 1: if I can fall asleep before it hits, sometimes I'll
Speaker 1: miss it, but not always. I'm horrible at falling asleep
Speaker 1: any But when I was a kid, every now and
Speaker 1: then that would work. I'd beat asleepover Probably I was
Speaker 1: seen as so weird, but I'd be like, I've got
Speaker 1: to go bed now, I gotta go to bed now. Now.
Speaker 1: Nobody knows, right, nobody, nobody knows what you do? Um
Speaker 1: so depending on the situation, migraines can qualify woman for
Speaker 1: protection under the ADA. So for your migraines to qualify
Speaker 1: as a disability under the ADA, you need to show
Speaker 1: that they're serious enough to limit your ability to perform
Speaker 1: your job or specific job tests giving your work environment.
Speaker 1: And you also have to demonstrate to your employer that
Speaker 1: you're a quote unquote qualified individual with the disability. And
Speaker 1: if you're applying for a job or even if you're
Speaker 1: an existing employee, you have to is your responsibility to
Speaker 1: tell your employer if you need an accommodation. So you
Speaker 1: have to disclose it to your employer if you need
Speaker 1: an accommodation, and then you can follow up with a
Speaker 1: request in writing that documents the putations that you have.
Speaker 1: That said, like we said earlier, like just because the
Speaker 1: ad exist doesn't mean things will happen. In practice, your
Speaker 1: employer can still let you go. They can still fire
Speaker 1: you even when you're protected under the ADA for different
Speaker 1: reasons um and they can refuse your requests for an
Speaker 1: accommodation as well under certain circumstances. So if your request
Speaker 1: to deny for reasons that weren't explaining for unknown reasons,
Speaker 1: you can file what they call a discrimination charge with
Speaker 1: the US Equal Employment Opportunity to Commission or the e
Speaker 1: o C, or with their state's enforcement agency. So if
Speaker 1: they dismissed the charge, you can continue on that process
Speaker 1: and file a lawsuit. So PEA, Like I said earlier,
Speaker 1: like a lot of people don't even know they're protected
Speaker 1: under the A d A in the first place, or
Speaker 1: don't think about it. So that's step one in like
Speaker 1: trying to fight any sort of discrimination against women that
Speaker 1: comes that has to do with invisible illness um in
Speaker 1: the workplace. And you know that also probably means that
Speaker 1: a lot of people don't know the steps to take,
Speaker 1: Yeah you know where to start, especially they don't have
Speaker 1: an HR department. Yeah, so yeah, I think it's kind
Speaker 1: of important to just get that out there. I agree,
Speaker 1: And I know that this sounds daunting and stressful, but
Speaker 1: it is something that I think it's worth pursuing. It's
Speaker 1: really we've touched before on how when you're not believed
Speaker 1: and you see your story like delegitimized and invalidated on
Speaker 1: on a public stage or just with people that you
Speaker 1: know how that can be damaging for you. So I
Speaker 1: know that it's scary to get your request approved to
Speaker 1: pursue the process, but I do think it's worth at
Speaker 1: least knowing about Yeah. Yeah, And a lot of people
Speaker 1: who have foiled discrimination charges with the eo C. What's
Speaker 1: two thousand five and two ten did have invisible disabilities. Um,
Speaker 1: so the most commonly sided conditions and those charges that
Speaker 1: were filed were invisible disabilities, according to the analysis that
Speaker 1: researchers did at Cornell University's Employment and Disability Institute. So
Speaker 1: there is hope, there's hope. I mean we can call
Speaker 1: it that. Yeah, I don't know, I don't mean to
Speaker 1: be cynical. Um, yeah, there's there are protections for us
Speaker 1: are a lot of people are using them already. So
Speaker 1: I hope that gives people who feel unprotected at work
Speaker 1: a little bit of hope too. Yeah. So on what
Speaker 1: you were saying just now about it being daunting, UM,
Speaker 1: A huge conversation and thinking about women invisible illness in
Speaker 1: the workplace is disclosure. So, as I said, you have
Speaker 1: to disclosed, um, your illness or your disability if you
Speaker 1: want to be if you want to receive accommodations in
Speaker 1: the workplace. And that's not an easy task. All the time,
Speaker 1: especially as all men. Yeah, um so if they don't.
Speaker 1: If people don't disclose their disabilities at work, it could
Speaker 1: affect their performance. This is based on data, and their
Speaker 1: colleagues may assume it's a matter of that person's competence.
Speaker 1: So that burden of concealing a disability really creates strain
Speaker 1: and social in work situations that might negatively affect the
Speaker 1: health and well being of a person. And in contrast,
Speaker 1: have shown that disclosure relieves the strain of hiding the
Speaker 1: condition which we talked about earlier, like how much labor
Speaker 1: that is, and increases the likelihood that the person will
Speaker 1: find and develop a social support network with others who
Speaker 1: might have similar conditions or experiences. Yeah. And I talked
Speaker 1: about in our episode on on CPTSD how having that conversation.
Speaker 1: I didn't have to strength to have that conversation. And
Speaker 1: I think I'm almost positive that my boss the time
Speaker 1: would have totally been on board. She would have been
Speaker 1: a really great helpful supportive system for me. She would
Speaker 1: have worked to make things easier for me. And looking back,
Speaker 1: I wish I had had the strength to do it.
Speaker 1: I didn't, but I wish that I had. But that's
Speaker 1: okay though, you know, like a lot of people aren't
Speaker 1: there yet too, people would connect with you on that level. Yeah,
Speaker 1: And I think that is something to to keep in mind,
Speaker 1: is it's not easy, and don't be too hard on yourself,
Speaker 1: if right. It's kind of like women already have to
Speaker 1: maintain a certain image in the workplace of being twice
Speaker 1: as strong and twice as productive and and having to
Speaker 1: disclose something that makes you quote unquote look weaker in
Speaker 1: other people's eyes. Um, it's not an easy task because
Speaker 1: the thing is, people with invisible disabilities still don't disclose
Speaker 1: their conditions, especially if they're young and have recently acquired
Speaker 1: the disability. So that's because disclosure still comes with risks,
Speaker 1: and disclosing could harm your competitiveness and workplace relationships. So
Speaker 1: in that survey that we talked about earlier, the Working
Speaker 1: Mother survey of people with invisible illnesses said they were
Speaker 1: comfortable discussing their disability with hr or coworkers. So that's
Speaker 1: a lot of people who still don't feel comfortable with it,
Speaker 1: and to have that conversation, you know, you have to
Speaker 1: be at a certain point. That's because they still may
Speaker 1: face prejudice or negative judgment for others, Like if you
Speaker 1: think about something like mental illness, like there's still a
Speaker 1: lot of stigma around mental illness, just thinking about the
Speaker 1: way we speak about it, just our lacks language and
Speaker 1: saying you know, things terms that really you know, using
Speaker 1: them willy nilly essentially, just we know that general culture
Speaker 1: on mental illness isn't accepting. So also disclosure can raise
Speaker 1: questions about whether a disability is quote unquote legitimate. So
Speaker 1: in addition to dealing with the stigma that's associated with
Speaker 1: having a disability, people with invisible disabilities risk being viewed
Speaker 1: as someone who's falsely seeking like some sort of like
Speaker 1: gain out of telling people that they have an issue,
Speaker 1: like we want to be pitied or have special treatment. Yeah,
Speaker 1: so other people in the workplace can call them complainers, hypochondriacs,
Speaker 1: attention seekers, which can cause even more distress on a
Speaker 1: person who's already dealing with some sort of condition or
Speaker 1: illness in the first place. And even employees with disabilities
Speaker 1: maybe monitored more closely than others or harassed yea, which
Speaker 1: is ridiculous. Absolutely, I I don't understand that urge people
Speaker 1: feel to have you proved to them that you're not
Speaker 1: trying to face can I don't know, get some kind
Speaker 1: of special treatment that to me doesn't make any sense.
Speaker 1: I feel like in general, people, I really think you
Speaker 1: should do a lot of work to to live your life.
Speaker 1: Like why I go through it? Why would I go
Speaker 1: through all the trouble of pretending to have a disability
Speaker 1: like I have, I have issues, I already have issues
Speaker 1: I have to deal with. Why would I make this up? Right?
Speaker 1: It doesn't make sense? And like you were saying, uh,
Speaker 1: something that I found a common thread I found in
Speaker 1: this research is when people disclose, they do feel that
Speaker 1: they have to work harder to show, like see I
Speaker 1: can still do do my work. And and to your point,
Speaker 1: women already have that. So it's like compound double indemnity.
Speaker 1: I don't know if that's the right word, yes, but
Speaker 1: I think we all understand a right from So when
Speaker 1: women specifically deal with the symptoms of invisible illnesses at work,
Speaker 1: like frequently being like to work because your O c
Speaker 1: DAN took you longer time to prepare like we talked
Speaker 1: about earlier, or maybe going to the bathroom often, or
Speaker 1: maybe needing something like a text reader, they face these
Speaker 1: gender stereotypes of women being lazy, or being incompetent, or
Speaker 1: being unprofessional, so they may turn to like bias avoidance,
Speaker 1: which is trying to avoid all of those stigmas. So
Speaker 1: they'll just grin and bear it because they're afraid their
Speaker 1: needs will be perceived as weaknesses and they may lose
Speaker 1: their jobs. So that's one thing that in the research,
Speaker 1: it seems like a lot of women are afraid of
Speaker 1: losing their jobs, and a lot of job markets are precarious,
Speaker 1: so it makes a lot of sense. Um, and the
Speaker 1: job is probably the thing in the first place that's
Speaker 1: able to help them afford treatment for the condition they get.
Speaker 1: So just think of all the pressure like disclosing puts
Speaker 1: on a woman be because of that. It feels like
Speaker 1: this is double ledged work, like you're damned if you
Speaker 1: do when you're damned if you don't. Yeah, it's it's
Speaker 1: like a weird never ending the snake eating the tail. Yes,
Speaker 1: thank you, thank you, because like you're saying, when it
Speaker 1: was all met at the beginning of not talking about
Speaker 1: it in the workplace, but we're talking about the workplace.
Speaker 1: It it's we need to have these conversations more. But
Speaker 1: you can't blame people for not having the conversations more. Yeah,
Speaker 1: it's not the job of the people to institute these
Speaker 1: types of changes in the workplace. Um So there are
Speaker 1: a ton of conditions that disproportionately affect young women specifically,
Speaker 1: like autoimmune diseases and millennials, which is like eighteen to
Speaker 1: thirty six at the top of this survey. I know
Speaker 1: it changes all the time and different people say different things,
Speaker 1: but I think, specifically and this research are the largest
Speaker 1: generation in the U S workforce, so a lot of
Speaker 1: working women are bound to have disabilities. Yet people still
Speaker 1: disbelieve young women who have health issues based on assumptions
Speaker 1: that young women should be healthy. So that can really
Speaker 1: make disclosure feel kind of like pointless. So even doctors
Speaker 1: like you were you brought up earlier, Even doctors disbelieve
Speaker 1: women who say they're sick when they can't see or
Speaker 1: explain issue. So there's a Bitch Media article in which
Speaker 1: the author, Kate Horowitz, describes going to the doctor after
Speaker 1: she felt weak, fatigued, and dizzy and hot with headaches
Speaker 1: for a while, and her doctor, a guy, a dude,
Speaker 1: told her she had conversion disorder and that she had
Speaker 1: a traumatic event in her childhood that she conferred it
Speaker 1: into performing the illness, like she was making it up.
Speaker 1: So she didn't find out that she had hypermobile Eller's
Speaker 1: down Law syndrome until six years later when and she
Speaker 1: was in grad school. And this story, I know a
Speaker 1: lot of women have it, but I can totally relate
Speaker 1: to it because I've been through that same situation where
Speaker 1: a doctor really discounted something that was real that was
Speaker 1: going in my life. So when I was in college,
Speaker 1: I went to the emergency room when I had a
Speaker 1: panic attack, but it was like it happened at the
Speaker 1: same time that I really felt like I couldn't breathe,
Speaker 1: and so I was telling the doctor, I feel like
Speaker 1: I can't breathe, like there's something going on. And after
Speaker 1: waiting a really long time in the e er which
Speaker 1: I will break from this a bit to say that
Speaker 1: women spend more time than men. They wait more time
Speaker 1: than men when they go to the er um, which
Speaker 1: goes with this goes back to this idea of thinking
Speaker 1: women's pain isn't as serious. But so, yeah, I saw
Speaker 1: the doctor and my mom was there with me, I think,
Speaker 1: and the doctor said he after or no tice. Essentially,
Speaker 1: is anything going on in your life right now. It's
Speaker 1: probably just anxiety. Gave me an anti anxiety pill that
Speaker 1: made me feel like a marshmallow and just kind of
Speaker 1: like sent me on my way, and I was like,
Speaker 1: I still feel like I can't breathe. Yeah, I was like,
Speaker 1: maybe that was a panic attack, but I still feel
Speaker 1: like I can't breathe. And so it took me going
Speaker 1: to a couple of places and finally coming to this
Speaker 1: black woman doctor who I can't even remember what she
Speaker 1: gave me, but found out that I had some sort
Speaker 1: of like swelling or inflammation of the esophagus. So it's
Speaker 1: like this is like right online, like with the data,
Speaker 1: so that can be treated, right. So yeah, it's just
Speaker 1: it happens all the time. Like I'm not the only
Speaker 1: person that this happens to know. Uh, it's one of
Speaker 1: the most frustrating things to me. We did an episode
Speaker 1: on doctors not believing women, and I think on average,
Speaker 1: it takes nine years longer for a woman to get diagnosed.
Speaker 1: I think it was indometrios is specifically, but diagnosis takes longer,
Speaker 1: getting treated in the emergency room takes longer, and women die. Uh.
Speaker 1: The heart diseases. The example specifically they gave um. It
Speaker 1: leads to death. The fact that doctors are not taking
Speaker 1: their their pain and their symptoms seriously, right but right,
Speaker 1: Oh yeah, that's a big point. Yeah, it's irreversible. You know,
Speaker 1: the damage that a person didn't do by not diagnosing
Speaker 1: someone earlier. Yeah, I think of all the years that
Speaker 1: you've spent needlessly in pain or struggling with something in
Speaker 1: this case, I lately, I've been struggling with anger outlets
Speaker 1: for anger, and I just can't stop thinking about how
Speaker 1: much we prioritize male pleasure success at the expense of
Speaker 1: female pain, and we legitimize one and we lawed one
Speaker 1: and the other is like just shut up, right, just
Speaker 1: go away. Anyway, We're going off on a slight tangent,
Speaker 1: but it has been something I've been thinking about a
Speaker 1: lot lately, and it's it's one of the things that
Speaker 1: it makes me angry, like immediately, how quickly we just
Speaker 1: don't believe or even if we like say, oh yeah,
Speaker 1: I remember once. I think I've told this story on
Speaker 1: the show before too. I had like these severe headaches
Speaker 1: where I was passing out and they sent me to
Speaker 1: to a neurologists, and I remember him saying, well, you're
Speaker 1: just gonna have to find a way to live with it.
Speaker 1: So it was like it's acceptable for women to be
Speaker 1: in pain. I think this is sort of like, Okay, well,
Speaker 1: that goes to the idea that women are supposed to
Speaker 1: be strong, like we have baby, we have a high
Speaker 1: pain tolerance, and obviously we can deal with this like
Speaker 1: we're superhuman. And that's specifically for about black women. That's
Speaker 1: the stereotype that we face, like we're supposed to be superwomen,
Speaker 1: were supposed to be superheroes. There's myth around us being
Speaker 1: this magical and all powerful and able to take on
Speaker 1: all of this pain and bear the burden of pain
Speaker 1: for everyone else. Yeah, So when we think about fibro
Speaker 1: mile just specifically, a lot of women really end up
Speaker 1: what is called catastrophizing about the condition to really emphasize
Speaker 1: how serious it is, and people with invisible illnesses in
Speaker 1: general really need to repeatedly remind others about their impairments
Speaker 1: because not every day is the same. Yeah. I know
Speaker 1: exactly what that is, because again, going back to my migraines,
Speaker 1: sometimes I wanted I wanted it to get worse just
Speaker 1: so people would believe me like if I vomited then
Speaker 1: of course, yeah, yep, clearly she's not making it up then,
Speaker 1: But that the headache part, the invisible part. People very
Speaker 1: ready to dismiss that. So I understand this catastrophe catastrophizing. Yeah,
Speaker 1: that's an interesting I've never seen that before. It is.
Speaker 1: It's a mouthful. And going back to our painful sex
Speaker 1: women in pain episode, this has come up time and
Speaker 1: time again the issue of not believing women when they're
Speaker 1: in pain. Um when they say they have a disability.
Speaker 1: It comes down to how women look and how they
Speaker 1: present or don't present, and of how the other person
Speaker 1: is taking that in. And there's the added emotional labor
Speaker 1: cost and pressure for folks, especially women who are often
Speaker 1: perceived as weaker, to hide it or yeah again, to
Speaker 1: prove that they deserve the job, that they're working hard
Speaker 1: through this they're yeah, they're real go getters, and but
Speaker 1: don't go too far because then you're a bitch. Yes,
Speaker 1: And often women who disclose are told to take time
Speaker 1: off to get well. I saw that come up a lot,
Speaker 1: which isn't gonna happen if you have a chronic in illness.
Speaker 1: It's in the name um or they might be accused of, yeah, exaggerating,
Speaker 1: being a hypochondriac, lazy, complain too much. And yet and
Speaker 1: yet at the same time also are accused of not
Speaker 1: being a better advocate for themselves. People want their cake
Speaker 1: and to eat it too. Ah, and yeah, it's it's
Speaker 1: kind of a paradox. If you don't display emotion, you
Speaker 1: aren't believed if you do your hysterical So again, there's
Speaker 1: a lot of tight ropes for bringing up here where
Speaker 1: you can't there's no winning, right And there's this study
Speaker 1: that really put it used word that I thought was
Speaker 1: really appropriate is that disclosure can be a sort of
Speaker 1: dance um for women with fiber mile, just specifically in
Speaker 1: the workplace, because in reality, disclosures like a lot more
Speaker 1: complicated than just a planned action that's done to get accommodations. Oftentimes,
Speaker 1: disclosure is like improvised and it happens in everyday conversations
Speaker 1: when somebody needs something in that moment, and risk are
Speaker 1: taking into consideration and risk avoidance and risk reduction. So
Speaker 1: that happened when women in that study needed to explain
Speaker 1: like there there are a few instances in which that
Speaker 1: happened in the study for the women and that's when
Speaker 1: they needed to explain their fluctuating workability, when others need
Speaker 1: it reminding about their invisible impairments, and when their work
Speaker 1: relationship changed. So because they can't control how people responded
Speaker 1: to their disclosure, they controlled whether they divulge the stigma
Speaker 1: and how much impairment they revealed and how much they
Speaker 1: expose themselves to scrutiny. Mm hmm. So there is hoping
Speaker 1: this as well, um that more companies are encouraging people
Speaker 1: to disclose their disability. We have a little more for
Speaker 1: all of you listeners, but first we have one more
Speaker 1: quick break for word from our sponsor m h and
Speaker 1: we're back, Thank you sponsor. So something that really comes
Speaker 1: up and thinking about this conversation of invisible illnesses and
Speaker 1: disabilities in the workplace is this idea of privilege or
Speaker 1: passing that like having an invisible illness can sometimes function
Speaker 1: as passing as someone without disabilities. So some ways of
Speaker 1: passing can include not disclosing certain information about yourself, or
Speaker 1: like avoiding having adaptive and assistive aids like canes, are
Speaker 1: wall curse or wheelchairs, or like only telling a few
Speaker 1: people about your illness or disability so no one can
Speaker 1: immediately tell that you have a disability or illness if
Speaker 1: it's invisible, so you don't often have to face the
Speaker 1: same stigma or judgment and problematic actions that people with
Speaker 1: readily visible disabilities too. So that's uh that functions that
Speaker 1: as a sort of privilege. But on the other hand,
Speaker 1: no one can tell immediately that you have a disability
Speaker 1: or illness, so they may think that the condition can't
Speaker 1: be that bad if it even exists at all. So
Speaker 1: it can kind of feel like people with invisible disabilities
Speaker 1: fit in with neither people with disabilities nor people without disabilities,
Speaker 1: which can feel kind of alienating sometimes. And passing quote unquote,
Speaker 1: passing can enforce structures that say a person must be
Speaker 1: able body to be treated. Well, yeah, and it's not
Speaker 1: always a choice though, And when it is a choice,
Speaker 1: it's just that because a lot of the time passing
Speaker 1: can be a protective strategy, and other times people are
Speaker 1: passed or I'm like, it's other people who assume that
Speaker 1: a person doesn't have the disability right. In an article
Speaker 1: on the Feminist with Disabilities for a Way Forward blog,
Speaker 1: and author describes the guilt of passing. But sometimes I
Speaker 1: don't feel quite real or as though I'm cheating an
Speaker 1: intruder in someone else's identity with regard to being disabled.
Speaker 1: That says some nasty consequences. In the past, I've gotten
Speaker 1: needs met, either because I can't bear to out myself
Speaker 1: or because someone doesn't quite think I'm truthful. Passing doesn't
Speaker 1: mean I'm not struggling to remain standing. While we're talking,
Speaker 1: I struggle with passing and being passed. Sometimes I try
Speaker 1: and do it to feel safer, never safe, and lose
Speaker 1: my integrity. Sometimes I am passed, and it's a mix
Speaker 1: of delight and a loss and a damage. Whatever I do,
Speaker 1: it's never enough. I'm never enough. I just found that
Speaker 1: quote so impactful just because it's really complicated, Like it's complex,
Speaker 1: and that struggle is a struggle in everyday life for
Speaker 1: people with invisible disabilities, and it's a struggle in the
Speaker 1: workplace as well as an extension of that. So it
Speaker 1: goes back to the idea of disclosure, Like you're already
Speaker 1: facing these issues that you just spoke about, and on
Speaker 1: top of that, you're a woman, you know, so you
Speaker 1: just have to deal with a lot of things. And
Speaker 1: this is something that I feel guilty about all the
Speaker 1: time too, because I have a mess or multiple sclerosis,
Speaker 1: and it doesn't always present itself and everybody it's It
Speaker 1: really varies wildly from person to person how it presents.
Speaker 1: And it's also like a progressive disease. So you can
Speaker 1: be a certain way at one point in your life
Speaker 1: and invisible and be visible because you're using an assistive
Speaker 1: aid at another point in your life. And I feel
Speaker 1: because I'm at a place where you can't hill at all,
Speaker 1: in certain situations, you can only it sometimes has flare ups,
Speaker 1: so in that case it can become visible. But because
Speaker 1: you can't really see my illness, I often feel so
Speaker 1: guilty and don't feel like I fit into one group
Speaker 1: or another. I'm not quite like like the Arthur says,
Speaker 1: whatever I do, it's never enough, I'm never enough because
Speaker 1: I don't feel I have this privilege to where people
Speaker 1: can't tell. So I'm not necessarily a person with disabilities.
Speaker 1: But in the moments where I am more affected by it,
Speaker 1: in the smaller ways, in the everyday ways, and in
Speaker 1: the more noticeable ways, and I feel like I should
Speaker 1: say something about this, like I should be louder about
Speaker 1: this for all the people who have these illnesses that
Speaker 1: they deal with that nobody can see. So I just thought,
Speaker 1: you know, this idea of having privilege and not having
Speaker 1: a privilege at the same time because nobody, when nobody knows,
Speaker 1: how are they going to address it? So it goes
Speaker 1: by to that idea of empathy and not assuming. Yeah, absolutely,
Speaker 1: and it is. It is complicated, and I have often
Speaker 1: felt that way to where I'm almost embarrassed to include myself.
Speaker 1: I don't feel like I'm suffering enough. Yeah, that's a
Speaker 1: perpetual problem for women, right, Yeah. Yeah, We're touching on
Speaker 1: a lot of things in this episode. Um, but we
Speaker 1: do have some some hopeful notes to end on, some
Speaker 1: ways to hopefully create change. One, I mean to start
Speaker 1: off with it, it is a feminist issue and we
Speaker 1: should treat it as such. Yes, yes, Enshare, people with
Speaker 1: disabilities in general are not invisible, right because we're speaking
Speaker 1: specifically about invisible illnesses today, but in general, people with
Speaker 1: disabilities are invisible in a lot of conversations, including the
Speaker 1: feminist one, so that should be said. Um. And also
Speaker 1: we need to educate people on and raise awareness of
Speaker 1: invisible illnesses. The Invisible Disability Project says there are quote,
Speaker 1: social cultural movement and an educational media project that consciously
Speaker 1: disrupts invisibility imposed upon unseen disabilities at the intersections of race, class, gender,
Speaker 1: and sexuality. So they're just one organization that's bringing visibility
Speaker 1: to people with invisible illnesses. And then employers can take
Speaker 1: steps to address the needs of people with invisible disabilities,
Speaker 1: like providing flexibility and centralizing accommodation funding right. And the
Speaker 1: thing about that too is that a lot of people
Speaker 1: may think that it's expensive to accommodate uh person with
Speaker 1: disabilities needs in the office, and that's not the case,
Speaker 1: um at all a lot of the time, So that's
Speaker 1: not an excuse. And another thing that we can think
Speaker 1: about is disclosure, which we talked about earlier. Removes that
Speaker 1: emotional labor of bearing the burden of like really juggling
Speaker 1: that illness without having the combinations that you need to
Speaker 1: get your work done, and changing that workplace culture so
Speaker 1: women feel comfortable just closing as they feel fit. And
Speaker 1: I know, make it sound easy by squeezing it into
Speaker 1: one line, and it's not that easy, um, But it's
Speaker 1: something we can continue to work on. And when making recommendations,
Speaker 1: professionals shouldn't imply that disclosure is something that only has
Speaker 1: positive consequences. They should really think about weighing the risks
Speaker 1: and learn from their clients about how their workplace environment
Speaker 1: is and the relationships in their workplace as well as
Speaker 1: what they think about their risk of disclosure. Yeah, it
Speaker 1: kind of reminds me of, um the conversation around sexual
Speaker 1: harassment and reporting to HR and how that can have
Speaker 1: negative impact on whoever was reporting that. It's not always
Speaker 1: a positive thing and we need to look at why
Speaker 1: that is and try to improve that. And another thing
Speaker 1: that we've been talking about a lot lately is destigmatizing
Speaker 1: mental health and all the conversations around that too. And
Speaker 1: I've just been thinking about how in this conversation and
Speaker 1: this whole thing, we're penalizing people for being sick for
Speaker 1: something that's out of their control and then telling them
Speaker 1: they're lucky to have a job, which is terrible. UM,
Speaker 1: So that needs to change and talking about this and
Speaker 1: hopefully bringing it up. I I learned a lot doing
Speaker 1: the research for this episode, and I I think that
Speaker 1: a lot of listeners will learn I have learned something
Speaker 1: hopefully if we've done our job, and I think that
Speaker 1: is that is an important step that is Step one
Speaker 1: is to start talking about this and to realize how
Speaker 1: how many people are impacted for these things. I agree
Speaker 1: with you, Annie, Yeah, thank you, thank you yeah. Creating
Speaker 1: a better workspace for everyone or workplace and workspace for
Speaker 1: women with disabilities creates a better workplace in general. It does.
Speaker 1: It's important to remember that this isn't some isolated issue
Speaker 1: that only revolves around certain sets of people. Like the
Speaker 1: work that we need to do and creating a better
Speaker 1: workplace for women with disabilities is work that improves industries
Speaker 1: and workplaces in general. And I would imagine if I
Speaker 1: was running a company, I would want I would be
Speaker 1: a good boss, and I would want people to be happy.
Speaker 1: But also I would imagine you would want people to
Speaker 1: be the most productive and best they can be, right.
Speaker 1: And the irony of that is that people think when
Speaker 1: they I'm generalizing, but a lot of employers think that
Speaker 1: when they hire people who have disabilities, are when a
Speaker 1: person with disabilities discloses their condition, that that means they're
Speaker 1: going to be less productive. And that perspective needs to
Speaker 1: switch to to what can I do as an employer
Speaker 1: to make sure that all of my employees are the
Speaker 1: most productive that they can be and it really it's
Speaker 1: not difficult. It doesn't have to be right, doesn't, It
Speaker 1: really doesn't. That brings us to the end of this episode.
Speaker 1: Thank you so much, Eaves for being a co host
Speaker 1: with me this week. Thank you for inviting me onto
Speaker 1: this warm, lovely I don't know what I'm trying to say.
Speaker 1: Thank you for inviting me onto Sminty. It's been it's
Speaker 1: been really enlightening to talk about this, and it feels
Speaker 1: like a privilege to be able to talk about this
Speaker 1: in the workplace, and and I'm happy that we got
Speaker 1: to do it today. I am too, And please come
Speaker 1: back any time, pitch me any of your ideas. We'd
Speaker 1: love to have you again, and we would also love
Speaker 1: to hear from you listeners. You can email us at
Speaker 1: mom Stuff at how stuff works dot com. You can
Speaker 1: find us on social media on Twitter at mom Stuff
Speaker 1: Podcast and on Instagram at stuff Mom Never Told You.
Speaker 1: Thanks to you for listening, and thanks as always to
Speaker 1: reproducer Andrew Howard.