Boston BSides - How to Be Sick With Success - Emily Pience

so welcome to being sick with success advocating for yourself in an apathetic world this is just not a thorough but it's kind of a down and dirty primer of laws that are applicable to you how to keep your job how to be the best patient that you can be and then also we're going to open up the discussion a little bit about why we need transparency about this some of it will be like really you need to actually tell people this I've worked in inch disability insurance for 15 years and yeah you really do need to tell people some of this so I apologize if it seems redundant or ridiculous so disclaimers this is me not my employers

obviously I'm not your employer your insurance company anything I say is not a guarantee of anything I am also not a lawyer specifically I'm not a disability lawyer so again the information I'm providing is based on my own personal experience in my work industry my knowledge and the best of my abilities as a researcher there's some I might I think it comes up a little bit have some words that sometimes makes people uncomfortable and like I said before it is a high level overview so I'm going to start with a quote disability is not a passive experience it's an active one it's trying to interact with the world that is not easily accept accessible I'm

more often mentally exhausted by the experience of disability that I am physically exhausted as we have the medical technology to better treat chronic illnesses hypertension I have Crohn's disease we live with them so that we have long-term side effects from their ongoing symptoms to the point where they veer into sometimes a disability and impacts our ability to function on a daily basis and so like I said it veers into disability a lot of people go what I don't have a disability I have hypertension I have diabetes that's not a disability so I guide you to the Americans with Disabilities Act their guide to disability rights laws which says a person who has a physical this is how they define disability a

person who has a physical or mental impairment that substantially limits one or more major life activities major life activities would be your ability interact with your surroundings on a daily basis the ability to feed yourself the ability to go to the bathroom the ability to transfer yourself from sitting to standing position to get in and out of cars to use stairs and or elevators to communicate caring for yourself seeing speaking being understood breathing excuse me sorry so how does this apply to infosec and I know it's kind of not cool to put the whole link but I put the link in there because it says if you work in these NIT these 10 things are probably killing you

and it doesn't say that on the page when you pull it up so these are the 10 things that they give us and these are the four that I feel affect everybody in infosec or most affects people in infosec specifically especially anxiety stress and depression there was a talk three years ago at Def Con that specifically discussed infosec and suicide attempts and alcoholism so I think we all know somebody who veers into having enough mental health issues where substance abuse has become a problem for them I mean we've all seen it everywhere 15 million u.s. adults live with major depressive disorder and out of those ninety-seven percent say that it affects their ability to work

two days out of the week so that gives you any idea so 15 million of us are walking around saying I can't function two days a week so having your chronic illnesses is like having a second job except instead of getting paid you're doing the paying nobody really talks about what happens if you're sick and you don't get better you don't die you get to live in the personal margins because it's either or another really well and you're never sick and going to die there's no recovery there's no getting over it and in our culture especially infosec there's no room for in between you're either awesome rock star you suck and get the heck out so

it's a pretty little picture that somebody made a meme of so Crohn's is what I have so how to be a professional sick kid that's why I consider myself that's the title it gave myself I've been sick since I was about eight years old I started having random abdominal pains that turned into diarrhea eight or nine times a day it affected my growth ability it affected my ability to in q Bertie I with her long process of diagnosis it took them ten years of me going to doctor after doctor after doctor saying something's wrong and then going no you're crazy or go through puberty oh maybe you have Munchausen's oh maybe it's stress oh maybe it's just

irritable bowel syndrome you need to eat more fiber and then finally after I was 17 and wait 89 pounds from being so ill for so long you're like oh maybe you really do have something so I was given a colonoscopy and diagnosed with Crohn's it um so see the next one so people ask how I define myself and that I use the the non of I use the definition a professional sick kid they ask do I consider myself a sufferer or victim of circumstance a survivor or a fighter and I've also been accused of using my experiences to gain attention like when you're open about stuff people like oh you're just doing it because you want to

attention you want people to hear you you want people to feel sorry for you and I see no being a survivor would indicate that I've survived something I haven't I deal with it every single day it's not true when I constantly live with it there's no surviving it again a fighter also means that I'm fighting something off and one of us is going to win mere Crohn's so I'm not hiding it on a daily basis I have to live with it to accept one's past ones history is not the same as drowning in it it's learning how to use it an invented pass can never be used because it cracks and crumbles under the pressures of a life like play

and a seasonal drought James Baldwin's on my favorite writers ever you can't invent the fact that you don't have something so the first part of advocating for yourself is it mittens self that something is wrong that you're not normal that you have certain limitations that you do need accommodations for and you need to be strong enough to know that you can use that as a voice so how do we go about doing this first of all you have to know your you have to know your disease or diagnosis know how to spell it correctly a lot of people don't know the basic anatomy and physiology of actually how it affects you and how it works know

how to give a summary of yourself in three minutes or less so like for instance if I was going to the emergency room today I'd say i'm a 34 year old female i have a 20-plus cute history of Crohn's I've had these surgeries in the past I'm having these symptoms for the past few weeks I saw my doctor last week he wants me to do this I'm here for this reason and also any other conditions that you may have or may affect you so again who what and what not and the when the long story so like I had a surgery 10 years ago I had this one to a couple years ago but these are the symptoms and

dealing with and then also know your respites your rights and responsibilities and these can be found I mean doctors office legally has to have them posted as does the emergency room and hospitals its your right to be listened to you by your hair providers its your right to have access to your full medical history and your medical file it's your responsibility to convey as to the best of your knowledge what's going on and it's also your responsibility to listen to your provider and ask questions until you understand it's their responsibility to continue to answer those questions until they know you understand it's also your responsibility to tell them if you're not going to follow a treatment playa

they will take you a lot more seriously so if you say okay you're going to prescribe you this drug I've been on that before it affects me this way so even if you want me to go on it I'm not going to do it like prednisone I've been on and off prednisone for years makes me miserable makes me you know huge hate it makes my partner insane because he has to deal with me so I say to them you know I know you're going to prescribe that for me but I'm not going to do it they'll take you a lot more seriously if you come back and you're like no I didn't do it they're going to write down

non-compliance which means that you don't care there's a difference between knowing what you can and can't do and will and won't put up with versus not caring so communicating that to them is a very important so keeping track of your so you need to have some source that's easily accessible to you possibly in a shareable place google docs Dropbox sharing platforms spider oak is a good one to being somewhat of a Luddite I keep mine in a word doc on my hard drive and I print it off every three to six months and keep it in a three-ring binder that I take with me to the doctor's office and you need to have certain information listed keep doing

that I'm sorry the name and number of all your doctors and specialities your current insurance coverage dates of all major surgeries and procedures medications relevant symptoms you've had recently timeline of recent incidents of your what's going on a copy of results of a recent diagnostic tests like again I said you have a right to that information you're at your doctor's office say hey can you you know 0x me a copy of my latest lab result you may not understand them but when you go to the emergency room when something happens you give it to them and they'll understand it and then that saves them a lot of back work of having to do it and

also you can obtain a copy of your explanations of benefits from your insurance provider they're usually saved through patient portals online 18 to 24 months back history and then after that you do have a right to request them in writing they're important too so that you because I with all of that information there's no way you're going to remember at all so sometimes it's good to have another version of what's going on so yeah I really did have this surgery I really did have a cat scan that sort of thing and it's important to have this accessible because doctors will take you a lot more seriously if you know the intimate details of everything going on they are going to take a lot

more seriously everything else that you have to say about what's going on with you I found this especially true in mental behavioral health i also have a depression and when I see those providers I bring this along as well these are all the physical aspects of what's been going on with me and this is how it's affected me mentally and they're a lot more willing to listen because they know i know what i'm talking about as far as myself is concerned keeping track of your so your personal logs there's a lot of apps out there there's and these are the icons for them there's my therapy med pill reminder how to keep track of your

dosages and everything my pill box pro which will actually remind you one to take your dosages I use GI buddy which is a Chrome's tracker pain symptoms number of bowel movements what they look like all that fun stuff this one is called i forget what levels fault and I apologize but it's basically a symptom tracker as well that one's called simple but it's simple with a y in it again is a symptom tracker and a healthcare tracker so you can combine the two in those and then we always have WebMD which I'm a little hesitant to use the app has an ability to save your symptoms but then it also always suggests you what's wrong with you which you know

usually it tells me a dengue fever and or lupus which we all know it's never lupus right so protecting your your job and how to keep it we all love our HR reps we want to say that they're automatically against us right there the man they're the ones who commenting us these stupid trainings that we have to sit through and has no relevance for our actual job and they're the people that you have to deal with what actually something goes wrong with your paycheck or something and your employer does have a business to run that's something you do have to understand and it they ultimately need to make business decisions that doesn't mean that they're

also not people that they also don't have they're totally bereft of feeling or understanding so we do need to remember the fees are your actual people even you want to yell their names at them all the time so who do I tell what and when and why again I go back to the Americans with Disabilities Act in the interviewing process it's illegal for employers to ask invasive health questions Oh have you ever had a surgery have you ever been absent from a job because you had an illness did you have a baby are you planning on having a baby except in cases of certain government contracts and as far as the armed forces are concerned because they have to know

that they can send you to Iraq Afghanistan wherever and they're not going to need to have a medical emergency for you because they can't prepare for that that's ridiculous and except as it relates to specific occupational duties so they are allowed to give you a physical health exam as long as it's applicable to your physical duties so if I work in a warehouse and I have to lift 30 pounds three times an hour for 12 hours a day they illegally are permitted to make sure that I can do that the Americans with Disabilities Act also i just kind of a primer applies a private state and local government employers labor unions with 15 or more

employees so a lot of us have employers that we've hit that definition and it prohibits discrimination in all employment practices including hiring firing advancement training they're not allowed to prohibit you from advancing in your career because you have a disability unless it affects your ability to perform certain occupational duties so who do I tell continued after you've been hired you know you you've been hired you've already had this thing or your newly diagnosed after you've worked for somebody again HR they're your go-to people they we often don't care for them but they're the group to ensure that that you have the accessibility and accommodations that you need and that they're legally required to give you they know the ins

and outs of what's required they know the laws they you you will have to disclose to them because it does have to medically certified what is going on there's usually a form there you're doctor has to fill out you know some so had a back injury seven years ago he had surgery he needs to be able to get up and stretch every 20 minutes he needs to be able to change from sitting to a standing position they have to give the accommodations that there are expected as well HR is not permitted to tell your direct manager however they do have to tell them that you need accommodations and what those specific accommodations are but they are not legally allowed to

tell them why however I recommend telling your manager and it can be as simple as I have a health condition this is how it affects me or it can be as detailed as I have Crohn's disease and I have to go to the bathroom 80 times a day they don't understand what they don't know they're going to think a lot more of you if they know you're you know not getting up to like go sit on your cell phone playing on facebook in the bathroom versus you're getting out because you have a medical need I also think it's important to tell certain co-workers transparency is important especially co-workers that support you or do you support them or your absences

will affect them again they will understand a lot more if they have knowledge of what's going on and how will this help you how does telling all these people help you again 88 accommodations they're legally your employer's legally has to provide reasonable accommodations so what does that mean it's legally defined as modifications to the practices or procedures of the job unless that would fundamentally alter the nature of the business so an example of that would be I'm a retail manager I can't work from home because the nature of the business is I have to be there for customer service reasonable also means cost effective to your employer not all employers can afford three thousand dollars at Stan work shape stations to

enable you to do that they can however afford you the ability to get up twice an hour to walk around and some you know examples of this would just be like I said sit stand workstations changes to your working day the ability to work from home slight hours giving you time off to go to medical appointments you know like for example if you are undergoing treatment for cancer you say well one of the accommodations I need is four hours off on Thursdays to go for chemotherapy and then I'm going to need two days off to recover from that family medical leave this was an access Creed in 1993 it is a federal law that applies to all public

agencies companies with 50 or more employees within a 75-mile radius it applies to all employees employed by the previous definition for you have to be employed at least for 12 months before you're eligible to be up to apply for it you have to also have worked at least at 1230 hours 30 50 excuse me it's changed within the past calendar year so and it protects leave for your own medical condition or two here for a family member who has met a serious medical condition again it has to be certified by a medical professional there is a process for it there are legal forms that do have to be filled out it it provides up to 12 weeks of job security

of unpaid leave within a 26 workweek rolling period so I go out with starting July fifteenth I go out for six weeks I still have six weeks until the July twelfth up the next year is how that works it doesn't have to be a continuous leave it can be intermittent so I need four hours off every Wednesday to go to physical therapy as an example of that and there are state versions of it I know maryland state of Maine California I'll have additional leaves family medical leaves that provide that go above and beyond this that provide additional ones so in that case both would apply then you have short-term everybody always this STDs and long-term

disability it's not a required benefit but it's pretty common especially if you work for entity and it's offered usually to full-time employees and sometimes two part-time it employees each policy at each company varies you have legal right to a copy of your policy from your human resources department and or the company providing the benefit coverage to you so some of the limitations of this are that it may have a waiting period you have to work so many months where you may have to be disease free for so long before you can be have it available to you certain limitations may be limited like i know we we had a policy in nebraska and any injuries that any of the

employees sustained in rodeos weren't covered because all the guys were rodeo riders on the weekend so if you film for here whatever on the weekend they weren't going to cover that and like is set exclusions for certain conditions and it provides income replacement up to a certain percentage again that tells you in your policy it's usually somewhere between 50 and 75 percent for a certain number of weeks it's short term is usually somewhere between 13 weeks and 26 and long term disability usually picks up after that employee assistance programs again not a requirement a lot of people a lot of companies do provide them so if it's usually a phone number that HR has that

they give to you you can call them usually 24 hours a day and ask for assistance with any of those things most of the time they'll triage you you'll talk to somebody for 20 minutes till triage your what kind of help do you need they usually most of them that I've experienced provide up to six counseling visits they'll pay for it if you go to one of theirs which you know usually it's somebody who's covered by your medical insurance they can also assist case management over the phone for your medical conditions and help you kind of rain in and keep track of everything that we talked about so if you're not mentally capable of doing that yourself

they can assist you in doing that and they can also advise you additional benefits that you may not be aware of what if I can't work so what if I've gone through all this gone thr they gave me accommodations I keep getting sick or it's not working I can't do it freelancing which we all know so much fun is always an option there's also social security disability benefits there's a list of ones that are considered guaranteed by Social Security Agency and it's a federal benefit it's a really laborious application process that is worth it if you need it if you are at the point where you can not financially sustain yourself or your children it is worth it to go through

the application process you call them or fill out an application online you set up an iphone interview with them you usually have to go through a medical you have to submit your medical records they review it two-thirds of people statistically are denied the first time around unless you have a presumptive diagnosis of end-stage renal failure and stage cancers complete blindness complete loss of all four limbs those are once they automatically approve they're like yep no problem we understand you're not going back to work or working as you were previously able to you can also doing this still earn up to a certain amount or work a certain number of hours per quarter and that's defined on an individual basis based on

how much you freely Slayer earns so once you apply for this and if you are accepted it doesn't mean you can't ever go back to work you can use it for as long as you need it and then if you get better or things change or new jobs are created that you can do you can say okay I don't need it anymore or you can have a trial period of work whether they'll let you do it it also after a certain amount of time enables you to be eligible for Medicaid so again if you're not able it's worth it if you're not able to care for yourself because you're a chronic illness you cannot live

without medical insurance I think we all know that right so it enables us to her i believe is six months of benefits I mean you do have to be out of work for six months prior to being eligible and if you've applied for a long term disability through your employer they will usually pay for a social security disability lawyer to help you with the appeal at process because it behooves them to get you off their benefit look at the government conveyor so they'll pay for the lawyer so that these things intertwined so it's important to know which is what and how it helps you finally we come to transparency we've spoken a little bit about that at the

BNA I'm going to kind of use like a woolly touchy-feely quote to tell the truth is an act of love in reference to this I'm talking about an act of love of yourself like I said before you have to admit if you're newly diagnosed if something changed you are not the person you were before you are a new person this is called the new normal you have to know annex that your life is going to be changed you'll have new experiences and new limitations because of this to withhold asst truth is an act of hate towards yourself in towards others or worse apathy I don't care because we the office of truth is actually apathy it's

not hate in an industry where there's a constant sense of competition and fear about being the best you know or enough you know I'm cool enough and manly enough I'm like the best hacker interpersonal experiences aren't usually shared we don't usually open up about them that limits you I think in a great number of ways how can you know how can you learn how can you experience other things if you don't share them and you can create partnerships and friendships that would otherwise not exist there's a lot of online support groups as well so if you don't feel necessary like you want to share with in infosec there are support groups on Facebook for everything that you can imagine um to

discuss a little bit about self-love this tweet actually came up this week jason scott said he had a depressive episode and he shared sup and instead of saying oh whatever info don't care he got sweets of warmest wishes thank you for sharing please let us know what we can do for you I wish people set this more often

so I think that's important resources that are available to you a DA gov is a great resource they have all the rules and everything that applies ccfa is a crohn's and colitis foundation of america so if you have more questions dark Romans or inflammatory bowel disease you can go there department of labor I got some of the more intimate details from IBD portal org and then the mighty calm is actually it's kind of like slate but for chronic illnesses so everything that they post applies to a chronic illness and is everything from like I'm not a good enough mom because I have a chronic illness to how do I support myself how do I find certain

resources and if you have any questions feel free to hit me up on Twitter and pickle fork and that's my handle and then you can email me and we have time for questions or concerns we can go into the weeds a little bit about things

things not to share I don't know I think that's a personal decision that you have to make um I think in the slide that you're talking about I was talking about doctors maybe and things you don't have to share like you know if you're there for depression you don't necessarily have to let them know when your last period was but if you're there abdominal pain that might be necessary information so what is and what isn't relevant as far as interpersonal relationships are concerned I'm personally very open because I want people to know I want there to be awareness I want there to be better understanding between all of us you know we consider self a global

community now and how can we do that if we don't even begin to talk about things but also you know I dated and got married and got divorced and dated again with all of this happening you don't have to let people in on everything and your first date you don't have to lead with your weaknesses I mean we never do we're always like yeah awesome you want to date me but you know at some point there's an understanding that you're going to be open and honest about things you don't have to necessarily go into the weeds about you know like I have diarrhea 47 times a day but you could just be like I have

stomach pain I have to go to the bathroom there is a sense of urgency i need to go or you know i have a knee injury I can't take stairs I can't walk around you know DC for two days like that's not something I'm going to be able to do so sit answer okay yes right right sometimes we're trying to not mention it people know is exactly because I had someone accuse be a porky yeah and I was working late at night late at night of course and I was just a little classier than that normal way yeah because you're tired and it had affected you the day so I'm an IV in then it was always that bad you know

what we have how am I going to hide the room five rochas not like the stairs it's not everything right and I tell you why I'm five years old friend scale but I can't help it right exactly and so I have become more open as I've gotten older in you know I you should bring it up at the right time like all right there fibro can go and write down the stairs without potentially being a legal liability to you right or i but sometimes it doesn't work and i think sometimes you had to be aware of a co-worker that literally I need to say always yeah of course he doesn't want the way I he says it's annoying okay not

because I think that loud because nobody here but because i don't want pattern because brightness and he actually realize it's always going to be people who are aids being very real yes and but you better not to be truthful up front the over again the more I realized because I think I've accomplished a lot considering where i was original yeah yeah yeah but and i'll send people had people told me just give up right and i managed to get for my master's degrees in work so yeah tamanna thank you have state what is the positive side this is how much I've achieved and i happen to a degree and you could also be open to

other people is really like I work for something with HIV and I had to make you say to me because I voices would be a fire for sipping on I know it's really long you might as well tell me otherwise I'm going to have fun right and I brought up the issues on Yelp with new job you know support groups and he says a lot of life of everybody I'll take what I like of you yes we'll be our own support you can say to me okay yeah and I this is the kind of game having a common frustrated I think sometimes makes you more even as a manager more real to your voice and more empathetic

to speak to that you know benefiting finding the benefits of or being proud of yourself for what you have accomplished they told me I could never have children and I probably couldn't hold down a full-time job my life expectancy based on the severity of my disease disease would be about 40 based on the current medical practices at the time when I was diagnosed I work full time I have a kid I have a full-time partner I had my colon removed in august of last year and I am still doing all of those things you know and I compared not to judge but comparatively I know some people in my groups that I speak to won't leave their house because of that

surgery and what they have to deal with the emotional and it has made me more empathetic has made me a more aware parent it's made me a more you know I as a teenage girl you're always like oh I'm always dealing with the hardest thing and you go through that as an adult to so being aware that you know what their actions their behavior they're dealing with their own fat on their own issues so the awareness that comes of that definitely is a huge deal and then it comes with age 2 i'm a lot more honest about specific things about my disease than I ever was before the older that I get and and like you said you you know

you do have to disclose you can't walk down the stairs during fire drills you have to just go that I'm you know you have to be in an area of refuge during that time they need to know how many employees that they are supposed to be looking for in those areas so there are certain reasons why you need to share those details in terms of celibacy and kind of visibility one of the things that sort of ended me like I know it will tend to be more common with disclosure as they get older yes they also just tend to be more powerful don't you have more years of job experience you have more knowledge cases

where you know I've seen people wind up in tough situations where they disclose something and what you can kind of bad yes so no someone has information if they're responding to poorly and we don't have a lot of alternatives fights easier if you're like well you know I have a excellent skill set it to the command and has so many years of experience right is you don't like me having these means then hey I can sue you and be I can get another job right don't have that kind of recourse it's harder to say ya know you should totally just as well and I find like I said I'm more comfortable just closing some things than others depending on who the

audience is when I was first diagnosed I'm into a really tight-knit all-girls high school so everybody knew what was going on when I went to college I didn't tell anybody anything except for my RA because like you know what was going on and that I also needed accessibility they put my room that's right across from a bathroom so I told them that was a requirement they had to provide but I didn't want to be like oh she's you know the sick girl she can't go with us she's no fun because she can't do this but then as I got older like they thought about me that way anyway because I couldn't go drinking or whatever and be

like you know what these are limitations in my life you either like me or not that's you I have to live my life so that I can live the best life that I have and that doesn't you know if you're going to think less of me because I can't go get drunk with you on the weekend or I need four hours off every three weeks for physical therapy there's a bigger problem there and yes you do have recourse you have legal recourse on a DA jakov there are several pages full of state and federal numbers and how to access a lawyer about that information who to go to there's a there's disability lawyers are actually

it's a specialty so there are specific ones that you can did you have any other okay no of course that will help you if you're disabled in Massachusetts that probably won't help you with your friend visiting in Florida pressed and transitioning I mean that's a different we haven't it's not a problem it's a difference we have not become aware enough of that yet and i still find so you had said you're bullied at work because i don't like the way you type people think is rude that I you know spend half my day in the bathroom well what they don't see is that I also come in on Saturday for four hours to make up

for that time so it's we haven't caught up to it yet we haven't caught up to a lot of the things that we are dealing with unfortunately any rate and laws are different in every state which is why there are as well as change it's important to stay on top of what does and doesn't apply to you and know who your resources are to go for that information so that's part of the ad vacation definitely any other comments or questions or all right well thank you guys so much for coming i hope you enjoyed it I'll be around if you want to talk more personally you don't want to share with the group and also be at

happy hour tonight so thanks everyone