February 19, 2025 • 14 mins
In this episode of Fine, But Not Fine, we dive into one of the biggest dilemmas for people with rare and chronic illnesses: Should you tell your employer about your diagnosis?
I share my personal experience with disclosure—why I chose to be open about my rare disease, how my work culture made that decision easier, and the benefits and challenges I faced. But this decision isn’t one-size-fits-all. We explore the pros and cons of disclosure, from gaining workplace accommodations and reducing stress to the risks of stigma and privacy concerns.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Kelly Paul (00:01):
You look fine, but you're not fine, and that's
exactly what we're here to talkabout. Welcome to Fine, But Not
Fine, the podcast aboutnavigating rare disease
healthcare battles and the messyreality of chronic illness. I'm
Kelly Paul, and I've been livingwith Mycosis Fungoides since
2015. This is a space for realtalk, real experiences, and
(00:26):
practical advice. Becausesurviving is one thing, but
figuring out how to actuallylive, that's the hard part.
Hey everyone, and welcome backto Fine, But Not Fine. Today
we're talking about one of thebiggest questions people with
chronic or rare diseases face,should you tell your employer
(00:50):
about your diagnosis? It's atough decision, and I'm telling
you, there is no one size fitsall answer.
Some people feel much saferkeeping it private because
they're worried about how itmight impact their career.
Others like me choose to bereally, really open about it,
(01:11):
either because they have to,because they may need time off
for treatment, or because theywork in a culture that makes
disclosure feel safe. I wouldalso like to throw in that
another possibility here is theydon't have to be concerned about
losing their job.
(01:32):
Now in this episode, I'm goingto share my experience with
disclosing my rare disease atwork, why I did it, and what
factors you might want toconsider when making this
decision for yourself.
Now, why I chose to disclose mydisease at work, for me,
disclosure wasn't something Ihad to wrestle with too much
(01:53):
because honestly, I reallydidn't have a choice. At one
point in my treatment, I had togo to the doctor's office three
times a week at inconsistenthours for Narrow Band UVB light
therapy. So it wasn't exactlysomething I could hide. My
schedule alone made it clearthat something was going on.
(02:16):
But beyond the logistics, I wasalso really, really lucky. I
worked someplace where I had atrusting leader, and the culture
was one where people supportedeach other through whatever life
threw at them. It wasn't justabout my rare disease, it was
about the kind of place where ifsomeone was going through
(02:38):
something hard, people ralliedaround them, and that made it
easier for me to be open aboutmy diagnosis.
I did not have to fear beingtreated differently or being
seen as less capable because ofmy diagnosis. I knew my work
spoke for itself, and I knew myteam had my back, but I also
(03:04):
know that not everyone has thiskind of work environment, which
is why this decision is soincredibly personal, and I want
to talk about the factors thatmight help you decide whether to
disclose or To keep it private.
So I'm going to approach this aspros and cons, and I'm going to
(03:24):
start with the pros ofdisclosing your rare disease at
work.
Now for me, the biggest benefitsof being open about my diagnosis
for lymphoma was access toworkplace accommodations, so
once your employer knows, forcancer, because that's legally
protected. They can'tdiscriminate against you for
(03:48):
your condition, and you may beeligible for accommodations
under the Americans withDisabilities Act, the ADA.
So in my instance, that meantthe flexibility for doctors
appointments without feelinglike I was sneaking around or
making excuses. There's alsoworkplace support and
(04:08):
understanding. You know, beingup front about my health meant
my colleagues knew why I had tostep out for appointments, and I
never felt like I had to justifyit. It also meant they could
step in and help when I neededand but that has to be
collective. You have to havethat culture where that's okay.
(04:30):
And the other pro, for me wasabout reducing stress and
anxiety. Let's be real. Hiding amajor part of your life is
exhausting, and it can also kindof, you know, create a little
bit of office gossip. I didn'thave to worry about keeping up a
facade or feeling guilty forprioritizing my health. You know
(04:52):
that mental weight was lifted,and that alone was worth it,
because I was trying to learnwhat this disease, this cancer,
the lymphoma that I have, was.
You know, when you're told, oh,it's indolent and it's likely
not, you know, going to resultin death, and you hear that on
one hand, but you hear thecancer word, right? And that
(05:14):
just that can instill a certainamount of fear.
There are also cons todisclosing your disease at work.
And you know disclosure is notthe right choice for everyone in
any way, shape or form. And hereare some reasons why people
choose to keep their diagnosisprivate.
(05:34):
One is the fear of being treateddifferently. Even though
workplace discrimination isillegal, it happens, and some
people worry their employer willsee them as less capable or pass
them over for promotions or keyprojects. And I have to tell
you, I have seen this in places.The fear of disclosure is real.
(05:56):
There is also the loss ofprivacy. Once you disclose it.
You can't take it back. Thegenie does not go back in the
bottle, and some people preferto keep their medical history
private and don't want to beknown as that sick person at
work.
And there's also the uncertaintyabout company culture. If you do
(06:18):
not fully trust your leadershipor HR department disclosure
might feel really risky. Someworkplaces might claim to be
supportive, but when push comesto shove, they don't actually
follow through.
Now I say all of this in thesense of pros and cons from me.
(06:38):
I am not a lawyer. If you are ina situation where you need a
legal opinion about workplacediscrimination and ADA and
covered disability, pleaseconsult with someone who knows
the law and knows the law whereyou are located.
So if you are trying to decidewhether to tell your employer,
(07:00):
here Here are some questions youmay want to ask yourself.
One, what do I need from myworkplace? Are you looking for
formal accommodations, scheduleflexibility, or just
understanding from your boss andcoworkers?
Two, do you trust your employerto handle this information
appropriately? Think aboutcompany culture, leadership,
(07:24):
attitudes and how similarsituations have been handled in
the past.
Three do you feel comfortablesetting boundaries? If you
disclose you need to be ready tocommunicate what you do and do
not want to discuss. I happen tobe someone who's very open,
because I would like to educatepeople that cancer isn't always
(07:49):
a death sentence, and that it'sso tainted by what we've
experienced in our past, weoften don't see what the present
or future is. So I already knowwhat I'm willing to talk about
with people, and I also know andam comfortable telling people,
(08:10):
yeah, no, we're not going totalk about that. So that's
something you need to be able todo.
And lastly, will keeping it asecret cause more stress than
its worth? Like I mentionedearlier, if you're going to be
worried about hidingappointments or explaining
symptoms, if you have no pokerface, disclosure might actually
(08:31):
be a relief.
So if you decide to disclose,here are some things you might
want to consider or differentways to approach the
conversation.
You need to choose the rightperson. Is it your direct
supervisor? HR, a trustedcolleague? Think about who needs
to know and who will be the mostsupportive based on your goals
(08:55):
for disclosing, right.
You need to decide how much youwant to share, because you do
not have to give all thedetails. I have a chronic health
condition that requires ongoingtreatment meets the minimum
requirements for letting someoneknow. You don't have to go into
what you were diagnosed with orhow, how you were diagnosed, or
(09:17):
you don't have to, you know,pull up your sleeve and show
someone what's on your arm orany of those things. You get to
make that decision, and you needto be clear about what you need.
If you need an accommodation,you need to be direct. I may
need flexible scheduling onthese treatment days. If you
(09:38):
just want them to be aware, sayso, and know your rights.
As I mentioned earlier,familiarize yourself with
disability laws and your companypolicies before the
conversation, and I'll go andshare this. From my experience,
I worked for an organizationthat, with a different leader, I
(10:02):
would have had to do paperworkfor FMLA for every single one of
my appointments three times aweek, whereas my leader said,
you get the work done. You dogood work. Just go. If you need
real more mass time off in thesense of thinking about days at
(10:23):
a time, then let's talk FMLA.
Now that's skirting the policiesat the workplace. And you know,
some people are okay with that,and some are not. And depending
on whether you're in a salariedposition or an hourly position,
if your job requires you to bephysically present and then you
aren't. That's not an option asupervisor is likely going to
(10:45):
make with you.
There, you know, some finalthoughts. There is no right
answer and there is no wronganswer. For me, it was the best
choice because of my workculture and the realities of my
treatment schedule. But forothers, keeping it private might
(11:07):
be the better path, and the keyis knowing your rights,
evaluating your environment anddeciding what will make your
work life less stressful, notmore.
And I want to mention this, thisapproach. I want to drive home
the culture of where you are,but I also want to point out the
(11:28):
culture of where you think youmight be going in the future.
I had a situation where I'd beenwith this employer for a long
time. It was really great andand obviously it worked out very
well for when I was to receivemy diagnosis and my treatment.
But when it came time to changejobs, if you looked at all of my
(11:50):
digital assets for mepersonally, they would say
something along the lines ofquilter, crafter, car enthusiast
living with the big C, right?Cancer, the big C.
When it came time for me tostart looking for a job, I was a
(12:11):
little concerned about that,that people would not interview
me because I had cancer, andtheir experience would associate
it differently than what I knewI could deliver. So I stripped
that out of all of my digitalprofiles so that it was not
present. And I did do someinterviewing, and I did get a
(12:32):
job that I wanted, and I got ajob that I wanted with a place
that that wouldn't havemattered. But before I secured
that, I realized I didn't wantto work for a company that would
discriminate against someonebecause they were living with
cancer.
I also understand I was in aposition where I could make that
choice. So that is somethingelse to keep in mind.
(12:56):
Now, if you found this episodehelpful, please make sure to
subscribe to Fine, But Not Fineso you don't miss future
episodes.
In the next episode, we're goingto talk about finding the right
doctor and building a medicalteam that listens, because let's
get real. Not all doctors arecreated equal, and when you have
(13:17):
a rare disease, it can feel likehalf the battle is just getting
someone to take you seriously.I'll share what's worked for me,
what red flags to look out forand how to advocate for yourself
in medical settings. Thanks forbeing here, and I'll see you
next time on Fine. But Not Fine.
(13:37):
Thanks for listening to Fine.,But Not Fine. If this episode
resonated with you, subscribe soyou don't miss what's next. And
if you've got a story, question,or just need to vent, reach out.
I'd love to hear from you. Untilnext time, take care and keep on
going.
You look fine, but you're not fine, and that's
exactly what we're here to talkabout. Welcome to Fine, But Not
Fine, the podcast aboutnavigating rare disease
healthcare battles and the messyreality of chronic illness. I'm
Kelly Paul, and I've been livingwith Mycosis Fungoides since
2015. This is a space for realtalk, real experiences, and
(00:26):
practical advice. Becausesurviving is one thing, but
figuring out how to actuallylive, that's the hard part.
Hey everyone, and welcome backto Fine, But Not Fine. Today
we're talking about one of thebiggest questions people with
chronic or rare diseases face,should you tell your employer
(00:50):
about your diagnosis? It's atough decision, and I'm telling
you, there is no one size fitsall answer.
Some people feel much saferkeeping it private because
they're worried about how itmight impact their career.
Others like me choose to bereally, really open about it,
(01:11):
either because they have to,because they may need time off
for treatment, or because theywork in a culture that makes
disclosure feel safe. I wouldalso like to throw in that
another possibility here is theydon't have to be concerned about
losing their job.
(01:32):
Now in this episode, I'm goingto share my experience with
disclosing my rare disease atwork, why I did it, and what
factors you might want toconsider when making this
decision for yourself.
Now, why I chose to disclose mydisease at work, for me,
disclosure wasn't something Ihad to wrestle with too much
(01:53):
because honestly, I reallydidn't have a choice. At one
point in my treatment, I had togo to the doctor's office three
times a week at inconsistenthours for Narrow Band UVB light
therapy. So it wasn't exactlysomething I could hide. My
schedule alone made it clearthat something was going on.
(02:16):
But beyond the logistics, I wasalso really, really lucky. I
worked someplace where I had atrusting leader, and the culture
was one where people supportedeach other through whatever life
threw at them. It wasn't justabout my rare disease, it was
about the kind of place where ifsomeone was going through
(02:38):
something hard, people ralliedaround them, and that made it
easier for me to be open aboutmy diagnosis.
I did not have to fear beingtreated differently or being
seen as less capable because ofmy diagnosis. I knew my work
spoke for itself, and I knew myteam had my back, but I also
(03:04):
know that not everyone has thiskind of work environment, which
is why this decision is soincredibly personal, and I want
to talk about the factors thatmight help you decide whether to
disclose or To keep it private.
So I'm going to approach this aspros and cons, and I'm going to
(03:24):
start with the pros ofdisclosing your rare disease at
work.
Now for me, the biggest benefitsof being open about my diagnosis
for lymphoma was access toworkplace accommodations, so
once your employer knows, forcancer, because that's legally
protected. They can'tdiscriminate against you for
(03:48):
your condition, and you may beeligible for accommodations
under the Americans withDisabilities Act, the ADA.
So in my instance, that meantthe flexibility for doctors
appointments without feelinglike I was sneaking around or
making excuses. There's alsoworkplace support and
(04:08):
understanding. You know, beingup front about my health meant
my colleagues knew why I had tostep out for appointments, and I
never felt like I had to justifyit. It also meant they could
step in and help when I neededand but that has to be
collective. You have to havethat culture where that's okay.
(04:30):
And the other pro, for me wasabout reducing stress and
anxiety. Let's be real. Hiding amajor part of your life is
exhausting, and it can also kindof, you know, create a little
bit of office gossip. I didn'thave to worry about keeping up a
facade or feeling guilty forprioritizing my health. You know
(04:52):
that mental weight was lifted,and that alone was worth it,
because I was trying to learnwhat this disease, this cancer,
the lymphoma that I have, was.
You know, when you're told, oh,it's indolent and it's likely
not, you know, going to resultin death, and you hear that on
one hand, but you hear thecancer word, right? And that
(05:14):
just that can instill a certainamount of fear.
There are also cons todisclosing your disease at work.
And you know disclosure is notthe right choice for everyone in
any way, shape or form. And hereare some reasons why people
choose to keep their diagnosisprivate.
(05:34):
One is the fear of being treateddifferently. Even though
workplace discrimination isillegal, it happens, and some
people worry their employer willsee them as less capable or pass
them over for promotions or keyprojects. And I have to tell
you, I have seen this in places.The fear of disclosure is real.
(05:56):
There is also the loss ofprivacy. Once you disclose it.
You can't take it back. Thegenie does not go back in the
bottle, and some people preferto keep their medical history
private and don't want to beknown as that sick person at
work.
And there's also the uncertaintyabout company culture. If you do
(06:18):
not fully trust your leadershipor HR department disclosure
might feel really risky. Someworkplaces might claim to be
supportive, but when push comesto shove, they don't actually
follow through.
Now I say all of this in thesense of pros and cons from me.
(06:38):
I am not a lawyer. If you are ina situation where you need a
legal opinion about workplacediscrimination and ADA and
covered disability, pleaseconsult with someone who knows
the law and knows the law whereyou are located.
So if you are trying to decidewhether to tell your employer,
(07:00):
here Here are some questions youmay want to ask yourself.
One, what do I need from myworkplace? Are you looking for
formal accommodations, scheduleflexibility, or just
understanding from your boss andcoworkers?
Two, do you trust your employerto handle this information
appropriately? Think aboutcompany culture, leadership,
(07:24):
attitudes and how similarsituations have been handled in
the past.
Three do you feel comfortablesetting boundaries? If you
disclose you need to be ready tocommunicate what you do and do
not want to discuss. I happen tobe someone who's very open,
because I would like to educatepeople that cancer isn't always
(07:49):
a death sentence, and that it'sso tainted by what we've
experienced in our past, weoften don't see what the present
or future is. So I already knowwhat I'm willing to talk about
with people, and I also know andam comfortable telling people,
(08:10):
yeah, no, we're not going totalk about that. So that's
something you need to be able todo.
And lastly, will keeping it asecret cause more stress than
its worth? Like I mentionedearlier, if you're going to be
worried about hidingappointments or explaining
symptoms, if you have no pokerface, disclosure might actually
(08:31):
be a relief.
So if you decide to disclose,here are some things you might
want to consider or differentways to approach the
conversation.
You need to choose the rightperson. Is it your direct
supervisor? HR, a trustedcolleague? Think about who needs
to know and who will be the mostsupportive based on your goals
(08:55):
for disclosing, right.
You need to decide how much youwant to share, because you do
not have to give all thedetails. I have a chronic health
condition that requires ongoingtreatment meets the minimum
requirements for letting someoneknow. You don't have to go into
what you were diagnosed with orhow, how you were diagnosed, or
(09:17):
you don't have to, you know,pull up your sleeve and show
someone what's on your arm orany of those things. You get to
make that decision, and you needto be clear about what you need.
If you need an accommodation,you need to be direct. I may
need flexible scheduling onthese treatment days. If you
(09:38):
just want them to be aware, sayso, and know your rights.
As I mentioned earlier,familiarize yourself with
disability laws and your companypolicies before the
conversation, and I'll go andshare this. From my experience,
I worked for an organizationthat, with a different leader, I
(10:02):
would have had to do paperworkfor FMLA for every single one of
my appointments three times aweek, whereas my leader said,
you get the work done. You dogood work. Just go. If you need
real more mass time off in thesense of thinking about days at
(10:23):
a time, then let's talk FMLA.
Now that's skirting the policiesat the workplace. And you know,
some people are okay with that,and some are not. And depending
on whether you're in a salariedposition or an hourly position,
if your job requires you to bephysically present and then you
aren't. That's not an option asupervisor is likely going to
(10:45):
make with you.
There, you know, some finalthoughts. There is no right
answer and there is no wronganswer. For me, it was the best
choice because of my workculture and the realities of my
treatment schedule. But forothers, keeping it private might
(11:07):
be the better path, and the keyis knowing your rights,
evaluating your environment anddeciding what will make your
work life less stressful, notmore.
And I want to mention this, thisapproach. I want to drive home
the culture of where you are,but I also want to point out the
(11:28):
culture of where you think youmight be going in the future.
I had a situation where I'd beenwith this employer for a long
time. It was really great andand obviously it worked out very
well for when I was to receivemy diagnosis and my treatment.
But when it came time to changejobs, if you looked at all of my
(11:50):
digital assets for mepersonally, they would say
something along the lines ofquilter, crafter, car enthusiast
living with the big C, right?Cancer, the big C.
When it came time for me tostart looking for a job, I was a
(12:11):
little concerned about that,that people would not interview
me because I had cancer, andtheir experience would associate
it differently than what I knewI could deliver. So I stripped
that out of all of my digitalprofiles so that it was not
present. And I did do someinterviewing, and I did get a
(12:32):
job that I wanted, and I got ajob that I wanted with a place
that that wouldn't havemattered. But before I secured
that, I realized I didn't wantto work for a company that would
discriminate against someonebecause they were living with
cancer.
I also understand I was in aposition where I could make that
choice. So that is somethingelse to keep in mind.
(12:56):
Now, if you found this episodehelpful, please make sure to
subscribe to Fine, But Not Fineso you don't miss future
episodes.
In the next episode, we're goingto talk about finding the right
doctor and building a medicalteam that listens, because let's
get real. Not all doctors arecreated equal, and when you have
(13:17):
a rare disease, it can feel likehalf the battle is just getting
someone to take you seriously.I'll share what's worked for me,
what red flags to look out forand how to advocate for yourself
in medical settings. Thanks forbeing here, and I'll see you
next time on Fine. But Not Fine.
(13:37):
Thanks for listening to Fine.,But Not Fine. If this episode
resonated with you, subscribe soyou don't miss what's next. And
if you've got a story, question,or just need to vent, reach out.
I'd love to hear from you. Untilnext time, take care and keep on
going.
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