Join us as we hear from an adolescent on her experience of living with a bleeding disorder as a teen.
Please note - Nothing that is shared in this episode should be interpreted as medical advice.
Okay, and welcome to
this episode of The Flow.
I'm very excited to
welcome our guest, Hannah.
Hannah is a 16 year old adolescent
living with a bleeding disorder.
Thanks for joining me.
Thank you so much for having me.
This has been something that I've
wanted to do for a long time.
Okay, so why don't we start with just
a question about remaining anonymous.
Why did you choose to
remain anonymous today?
I think that my story to me is so personal
and I decided to remain anonymous because
I do wanna share my story and help other
teens, but I wanna do it in a way where
I feel like my privacy is respected.
I can share more because I know that
my identity is, is just for me and
I'm doing this for other people.
Thank you and thanks again for being here.
I think it will mean a lot to others,
16 year olds or teens to hear a
story and be able to relate to that.
And I think everybody can relate who
maybe has a bleeding disorder to wanting.
In some ways to protect their
personal privacy, but still share a
story that's meaningful to others.
So thank you for that.
Yeah, for sure.
So maybe let's begin by telling me what
is your bleeding disorder diagnosis?
I have vulnerable brands
and I have type two.
And when and how were you diagnosed?
I was diagnosed as soon as I was born
because I have two older brothers and
my dad who all have vulnerable brands,
type two, so they knew to test me
for it, but they found it in my dad.
When my mom was actually studying in
med school and they started teaching
about bleeding disorder and the
symptoms that they were explaining
were very similar to stuff that my
dad was dealing with at the time.
And my mom asked him to get tested
and it turned out that he did have
Vulner brand and no one in his family
knew it's obviously, so they all
got tested and figured that out.
But yeah, so.
That's how they figured out that my dad
had it and his whole family, and it was
passed down to me and my two brothers.
It's such an amazing piece of information
I think because so often we hear that.
Primary care providers can miss
diagnosis, and I, I just think that
it's so wonderful that your mom
caught that and actually advocated for
your dad to get tested and then that
information was shared with his family.
And then how nice for you.
And your family to start out at least
knowing that this diagnosis was there
and, and maybe what to do, how to
treat, how to, how to live with that
and, and just have that information.
I, I think that's a
really remarkable story.
And I'm, I'm especially grateful to it
because when I started to have issues and
when my journey like started to progress,
we knew mostly where it was coming from.
So it made finding a solution for me
a lot easier, which was definitely a
benefit that many people don't have.
So you had already knew that you had.
This bleeding disorder.
So can you think of a time where
maybe an issue came up and even with
bleeding and you thought, okay, we
know this is the bleeding disorder,
so we know what to do with this.
Like maybe a first time at something.
So I was out one time and it
was at the beginning where I
just started menstruating and.
I didn't really know what was going on.
It was very unusual and what had happened
was really surprising to me, and I was,
it was really heavy and I was shocked,
but I came home that night and my mom had
known right away to give Meran examined
acid because it had already been given.
To my brothers and to me for
previous stuff, like really bad
bruises and it was written on
our medical alerts and et cetera.
So that was something that I feel like
was towards the beginning, before I
had found a real solution that I only
got the benefit of solving that issue
because I already knew my diagnosis.
That's a great example because I think
I have heard from others that that first
menstruation can be very intense for some.
And having that knowledge ahead of
time sounds like it was really helpful.
Yeah, for sure.
Yeah, it was very beneficial.
And what have been some of your
experiences that you could share with
our listeners about living with a
bleeding disorder as an adolescent?
I've actually, I found it quite hard
being a teenager with a bleeding disorder
because you're always surrounded by a
lot of people who really don't understand
what you're going through, even if
they try to, it's not something you
really know until you experience it.
And this kind of issue with menstruation.
It's not really discussed,
especially with a bleeding disorder.
It's so minute in our society
that it's not well known.
So like as an example, one of the
things that I experienced that I was
really upset about was that I was in
gym class and I really was not feeling
well because it was a really heavy day
for me and I could not participate.
I was in really bad pain and my
teacher looked at me and she said, I'm
a phys ed teacher, and I know that.
Exercise always makes menstruation
better, so stop using that excuse.
And I even explained to her how my
situation was unique and that that
mindset didn't apply to me, but it
did not seem to shift her perspective.
And I was really shocked and disappointed
that the woman who was responsible
for teaching young girls about how.
People's bodies react differently
to menstruation and puberty.
Didn't even know what I had going
on and didn't respect what I wanted
or the boundaries that I, that
I felt like I needed to put up
because of my bleeding disorder.
And she was willing to dismiss my issue.
And that was just a time
where it was just mind.
My mind was open to the
fact that this issue was.
It's so small for people that don't
know about it, and it really deeply
affects people and I think it should be
more well known and more people should,
it should be educated to more people.
So stuff like this doesn't happen.
And did the school know that
you had a bleeding disorder?
Yeah, I had.
I had to.
I had told my teacher and
she had known because.
It was really bad at a point for me
that I had to take time off from school.
And I specifically reached out to her
thinking that she would be a teacher
that I could lean on for support
because of the class that she teaches.
She teaches health class.
But unfortunately that was, I was really
sad to see that that was not the case.
I'm sorry that that happened.
'cause that must have been very
shocking and very disappointing.
It really was.
You really do expect a little bit more
support, especially when you've clearly
articulated what your situation is and
this teacher had known ahead of time.
Any other experiences that you've
encountered that you, that, of living with
a bleeding disorder that comes to mind
for you that's maybe a bit unique or from,
from others without a bleeding disorder?
Well, actually I did have a positive
experience with one of my teachers.
I was, like I said, I was dealing with
a really difficult time and my school
was quad metered, which meant that
our classes were in two hour shifts,
so there was, at the beginning of the
year, I asked the teacher to go to the
bathroom every day because we had the
same class every day for two hours and.
As someone who was mentioning,
I couldn't sit in that class for
two hours without being worried
and not going to the washroom.
So he got frustrated with me and he
thought I was bored disrespectful
because I kept leaving the class and
I apparently wasn't paying attention.
But that really wasn't the case.
And I did reach out to him with the help
of my mom and I explained my situation
and however hard that was to open up
to my teacher, it really was beneficial
to me because he understood from that
point on, and he was very respectful and
very kind of what I needed and, and he
tried his best to be accommodating even
though it wasn't something he could fully
comprehend because he doesn't menstruate
and he doesn't understand the implications
of the bleeding disorder that I have.
It's nice that you had another experience
where at least if he couldn't understand,
he was willing to be supportive of that.
That's like to counteract.
To counteract the bad.
Yes, yes, exactly.
It's nice to have a little
bit of a balance there.
And what about with friends where
you, have you been able to share
your experiences with friends?
Do friends understand?
I think friends try their best.
But definitely my closest friends
know because it is a health concern.
So God forbid anything happens to me,
they will know what to say because it's
obviously having bleeding disorder spans
further than just menstruation issues.
But it definitely is really
hard opening up to people.
Some people think it's weird and they
don't know how to react or what to say.
But I'm really lucky where I found
friends that really do their best
to support me and to help me and
just try their best to understand.
So especially during the time where
I wasn't in school, I had to explain
to my friends why I wasn't there.
And some really stepped up and took
that as an opportunity to really
help me out with my workload and
gimme all the support they could.
And I definitely appreciated that
and I felt very supported and heard.
And I think it sounds so beneficial to
have almost that core group that really
is there to help support, even if they
can't understand, help out when they can.
And I like what you pointed out,
even that you've equipped them with
how to help if something were to.
Happen that you would
need their assistance.
And I, I think that's, I
think that's really neat.
How, so did you just sort of walk
them through, here's what you do,
how, how did you know how to do that?
So I explained to them,
what my medical meant..
And I also do have a factor first card.
In my backpack that the hospital
has given to me, that just explains
more in detail about my condition
and treatment and et cetera.
So my really close friends
know where that is.
But I'm more just new because I could
tell that this, for me, this isn't an
issue that I wanted to take lightly.
And if something happened, I wanted to
know that I was prepared and I prepared
the people in my surroundings to
properly get me the help that I needed.
Such great advice in terms of having
those core friends know what the a
medical alert means, where is it located?
Because there's so many now and
they go in different places.
And I actually, I really do
love my medical alert because
it's hidden on my bracelet.
So it looks like a regular piece
of jewelry with a nice engraving.
And I think that even if
you don't want people.
To know what you have going on,
it's still best to equip yourself.
So getting a medical or was kind of
my first step because a lot of people
don't even notice it, which I think
is great that you have it on yourself
for protection and it's more something
that you can do just for yourself.
And have you used any
apps around tracking.
I know for example, there was a new
app that just came out called We
Thrive that is actually specific for
adolescents with bleeding disorders.
Like have you ever tried I know years
ago there was the suggestion of carrying
around, I think they called it a
period journal, years and years ago.
But of course we've gone away
from paper journals in this way.
Have you tried any of the apps
out there that help track or.
Yeah, I actually really liked the
health app, just the regular health
app that comes with your Apple phone.
And I tracked, it's really easy for me
because you can track your medications
in it as well as, Your menstruation.
So if you bled or spotted, and if it
was light, heavy, or medium, and your
symptoms that you experienced that day,
and it gives you a really big variety,
which I really appreciated, and you can
just check them off, which is nice, fast,
and easy, and it stores them up for you.
And I really did like that.
I did also try, what's it called, flow.
I think so.
I think so.
I did try that one, but I didn't enjoy
it as much and I found that there was
just too much going on in that ad for me.
But the really important details that
I would get from doctors or specific
from that day would go in a note that
I had titled special Info about Me.
And did you find it easier when you
were going to your appointments to just
kind of have that information ready?
Definitely because they obviously ask
you how long you've been bleeding and
what, like what severity your bleeding
is, and I found it really easy to have
it on hand so we could just cut straight
to the chase and also writing down
solutions and what I should be doing.
Was really helpful.
And also just to look back on that,
if I ever need any comfort, it really
helps me know that if something goes
wrong again, I know what to do and I
had the support to know what to do.
So that was all really helpful.
Actually, I did find it helpful.
That's good to know.
'cause I think others maybe
sometimes wonder like, how,
how will I keep track of this?
Is it even worth it?
Where do I keep track of this?
Does it make a difference
once I get to the doctor?
Definitely makes a difference
and it's definitely worth it.
So what would you want
others your age to know?
I think it's really important to
understand that even though to others,
they may think the topic is taboo and
we shouldn't talk about it, especially
in the settings that teens find
ourselves in, surrounded by people
who you may think are judging you.
Trust me when I say I
know what it feels like.
And just because it's not spoken about
it doesn't mean you're the only one.
Who's experiencing it and maybe you
sharing your story could help someone
else, just like I'm trying to do.
And if you're listening to this, you
should know that you're much luckier
than I was because Heroic is such a great
resource and I really found it late in my
journey, and I wished I found it earlier
because there's just amazing things
that can help you feel less alone and.
Even now that I know this portal
exists for women and girls
like me, I feel so much better.
And I feel like everything is just
getting better for women and for people
who menstruate with similar issues.
And I think that's just so important
that things only go up from
here and the support continues.
So even if you are struggling,
everyone around you is working
to make it better for you.
Thank you so much.
Such good advice in terms of passing
on and sharing all of these things
with others that might be listening.
I think it really does make a
difference when we share our stories.
It makes others feel they're not alone.
It makes others go, yeah, I
know what that feels like.
It happens to me.
So I think, mm-hmm.
It's just wonderful that you came on
today to share some of your story,
share some of your experiences
and, and really be a part of that.
So thank you so much.
Is there anything else before we end today
that you would like listeners to know?
I mean, even if you can't find someone
in your school that, or your friends that
can help or support you, there is heroic.
There are doctors.
There are parents who hopefully can be
there for you to lean on and get support.
So there will always be
someone there for you.
And I think that's just so important to
remember someone who will do anything
they can to understand and help you.
So it's important not to forget that.
Well, I really wanna thank you for
joining me today and sharing all of this
really valuable experience that you have.
Literally experienced and, and that you
were willing to come on and share and, and
be so vulnerable in that space because all
of the things that you said earlier that
sometimes it's not received well, people
don't understand sometimes the experiences
don't go as well as we hope they would.
So I just think it was very brave and
I thank you for being willing to share
your experiences so that others can.
Feel that sense of not being alone
and have that similar understanding.
So a big, big, huge thanks
to you for joining me today.
And thank you for providing me with this
space where I feel safe enough to do that.
So that's also right back at you.
Well, it's been wonderful having you.
Thank you so much.