Join us as we hear from an adolescent on her experience of living with a bleeding disorder as a teen. This episode is in English only.

Please note - Nothing that is shared in this episode should be interpreted as medical advice.

Okay, and welcome to

this episode of The Flow.

2

I'm very excited to

welcome our guest, Hannah.

3

Hannah is a 16 year old adolescent

living with a bleeding disorder.

4

So welcome.

5

Thanks for joining me.

6

Thank you so much for having me.

7

This has been something that I've

wanted to do for a long time.

8

Excellent.

9

Excellent.

10

Okay, so why don't we start with just

a question about remaining anonymous.

11

Why did you choose to

remain anonymous today?

12

I think that my story to me is so personal

and I decided to remain anonymous because

13

I do wanna share my story and help other

teens, but I wanna do it in a way where

14

I feel like my privacy is respected.

15

I can share more because I know that

my identity is, is just for me and

16

I'm doing this for other people.

17

Mm-hmm.

18

Thank you and thanks again for being here.

19

I think it will mean a lot to others,

16 year olds or teens to hear a

20

story and be able to relate to that.

21

And I think everybody can relate who

maybe has a bleeding disorder to wanting.

22

In some ways to protect their

personal privacy, but still share a

23

story that's meaningful to others.

24

So thank you for that.

25

Yeah, for sure.

26

So maybe let's begin by telling me what

is your bleeding disorder diagnosis?

27

I have vulnerable brands

and I have type two.

28

Okay, thanks.

29

And when and how were you diagnosed?

30

I was diagnosed as soon as I was born

because I have two older brothers and

31

my dad who all have vulnerable brands,

type two, so they knew to test me

32

for it, but they found it in my dad.

33

When my mom was actually studying in

med school and they started teaching

34

about bleeding disorder and the

symptoms that they were explaining

35

were very similar to stuff that my

dad was dealing with at the time.

36

And my mom asked him to get tested

and it turned out that he did have

37

Vulner brand and no one in his family

knew it's obviously, so they all

38

got tested and figured that out.

39

But yeah, so.

40

That's how they figured out that my dad

had it and his whole family, and it was

41

passed down to me and my two brothers.

42

It's such an amazing piece of information

I think because so often we hear that.

43

Primary care providers can miss

diagnosis, and I, I just think that

44

it's so wonderful that your mom

caught that and actually advocated for

45

your dad to get tested and then that

information was shared with his family.

46

And then how nice for you.

47

And your family to start out at least

knowing that this diagnosis was there

48

and, and maybe what to do, how to

treat, how to, how to live with that

49

and, and just have that information.

50

I, I think that's a

really remarkable story.

51

And I'm, I'm especially grateful to it

because when I started to have issues and

52

when my journey like started to progress,

we knew mostly where it was coming from.

53

So it made finding a solution for me

a lot easier, which was definitely a

54

benefit that many people don't have.

55

So you had already knew that you had.

56

This bleeding disorder.

57

So can you think of a time where

maybe an issue came up and even with

58

bleeding and you thought, okay, we

know this is the bleeding disorder,

59

so we know what to do with this.

60

Like maybe a first time at something.

61

Right.

62

So I was out one time and it

was at the beginning where I

63

just started menstruating and.

64

I didn't really know what was going on.

65

It was very unusual and what had happened

was really surprising to me, and I was,

66

it was really heavy and I was shocked,

but I came home that night and my mom had

67

known right away to give Meran examined

acid because it had already been given.

68

To my brothers and to me for

previous stuff, like really bad

69

bruises and it was written on

our medical alerts and et cetera.

70

So that was something that I feel like

was towards the beginning, before I

71

had found a real solution that I only

got the benefit of solving that issue

72

because I already knew my diagnosis.

73

That's a great example because I think

I have heard from others that that first

74

menstruation can be very intense for some.

75

Mm-hmm.

76

And having that knowledge ahead of

time sounds like it was really helpful.

77

Yeah, for sure.

78

Yeah, it was very beneficial.

79

Wonderful.

80

And what have been some of your

experiences that you could share with

81

our listeners about living with a

bleeding disorder as an adolescent?

82

I've actually, I found it quite hard

being a teenager with a bleeding disorder

83

because you're always surrounded by a

lot of people who really don't understand

84

what you're going through, even if

they try to, it's not something you

85

really know until you experience it.

86

And this kind of issue with menstruation.

87

It's not really discussed,

especially with a bleeding disorder.

88

It's so minute in our society

that it's not well known.

89

So like as an example, one of the

things that I experienced that I was

90

really upset about was that I was in

gym class and I really was not feeling

91

well because it was a really heavy day

for me and I could not participate.

92

I was in really bad pain and my

teacher looked at me and she said, I'm

93

a phys ed teacher, and I know that.

94

Exercise always makes menstruation

better, so stop using that excuse.

95

Mm-hmm.

96

And I even explained to her how my

situation was unique and that that

97

mindset didn't apply to me, but it

did not seem to shift her perspective.

98

And I was really shocked and disappointed

that the woman who was responsible

99

for teaching young girls about how.

100

People's bodies react differently

to menstruation and puberty.

101

Didn't even know what I had going

on and didn't respect what I wanted

102

or the boundaries that I, that

I felt like I needed to put up

103

because of my bleeding disorder.

104

And she was willing to dismiss my issue.

105

And that was just a time

where it was just mind.

106

My mind was open to the

fact that this issue was.

107

It's so small for people that don't

know about it, and it really deeply

108

affects people and I think it should be

more well known and more people should,

109

it should be educated to more people.

110

So stuff like this doesn't happen.

111

And did the school know that

you had a bleeding disorder?

112

Yeah, I had.

113

I had to.

114

I had told my teacher and

she had known because.

115

It was really bad at a point for me

that I had to take time off from school.

116

Mm-hmm.

117

And I specifically reached out to her

thinking that she would be a teacher

118

that I could lean on for support

because of the class that she teaches.

119

She teaches health class.

120

Mm-hmm.

121

But unfortunately that was, I was really

sad to see that that was not the case.

122

Mm.

123

I'm sorry that that happened.

124

'cause that must have been very

shocking and very disappointing.

125

Yeah.

126

Yeah.

127

It really was.

128

You really do expect a little bit more

support, especially when you've clearly

129

articulated what your situation is and

this teacher had known ahead of time.

130

Mm-hmm.

131

Any other experiences that you've

encountered that you, that, of living with

132

a bleeding disorder that comes to mind

for you that's maybe a bit unique or from,

133

from others without a bleeding disorder?

134

Well, actually I did have a positive

experience with one of my teachers.

135

I was, like I said, I was dealing with

a really difficult time and my school

136

was quad metered, which meant that

our classes were in two hour shifts,

137

so there was, at the beginning of the

year, I asked the teacher to go to the

138

bathroom every day because we had the

same class every day for two hours and.

139

As someone who was mentioning,

I couldn't sit in that class for

140

two hours without being worried

and not going to the washroom.

141

So he got frustrated with me and he

thought I was bored disrespectful

142

because I kept leaving the class and

I apparently wasn't paying attention.

143

But that really wasn't the case.

144

And I did reach out to him with the help

of my mom and I explained my situation

145

and however hard that was to open up

to my teacher, it really was beneficial

146

to me because he understood from that

point on, and he was very respectful and

147

very kind of what I needed and, and he

tried his best to be accommodating even

148

though it wasn't something he could fully

comprehend because he doesn't menstruate

149

and he doesn't understand the implications

of the bleeding disorder that I have.

150

Right.

151

Right.

152

It's nice that you had another experience

where at least if he couldn't understand,

153

he was willing to be supportive of that.

154

Right.

155

Yeah.

156

That's like to counteract.

157

To counteract the bad.

158

Yes, yes, exactly.

159

It's nice to have a little

bit of a balance there.

160

Yeah.

161

And what about with friends where

you, have you been able to share

162

your experiences with friends?

163

Do friends understand?

164

I think friends try their best.

165

But definitely my closest friends

know because it is a health concern.

166

So God forbid anything happens to me,

they will know what to say because it's

167

obviously having bleeding disorder spans

further than just menstruation issues.

168

But it definitely is really

hard opening up to people.

169

Some people think it's weird and they

don't know how to react or what to say.

170

But I'm really lucky where I found

friends that really do their best

171

to support me and to help me and

just try their best to understand.

172

So especially during the time where

I wasn't in school, I had to explain

173

to my friends why I wasn't there.

174

And some really stepped up and took

that as an opportunity to really

175

help me out with my workload and

gimme all the support they could.

176

And I definitely appreciated that

and I felt very supported and heard.

177

Hmm.

178

That's wonderful.

179

Wonderful.

180

And I think it sounds so beneficial to

have almost that core group that really

181

is there to help support, even if they

can't understand, help out when they can.

182

And I like what you pointed out,

even that you've equipped them with

183

how to help if something were to.

184

Happen that you would

need their assistance.

185

Yeah.

186

Yeah.

187

And I, I think that's, I

think that's really neat.

188

How, so did you just sort of walk

them through, here's what you do,

189

how, how did you know how to do that?

190

So I explained to them,

what my medical meant..

191

Mm-hmm.

192

And I also do have a factor first card.

193

In my backpack that the hospital

has given to me, that just explains

194

more in detail about my condition

and treatment and et cetera.

195

So my really close friends

know where that is.

196

But I'm more just new because I could

tell that this, for me, this isn't an

197

issue that I wanted to take lightly.

198

And if something happened, I wanted to

know that I was prepared and I prepared

199

the people in my surroundings to

properly get me the help that I needed.

200

Such great advice in terms of having

those core friends know what the a

201

medical alert means, where is it located?

202

Because there's so many now and

they go in different places.

203

Right.

204

And I actually, I really do

love my medical alert because

205

it's hidden on my bracelet.

206

So it looks like a regular piece

of jewelry with a nice engraving.

207

And I think that even if

you don't want people.

208

To know what you have going on,

it's still best to equip yourself.

209

So getting a medical or was kind of

my first step because a lot of people

210

don't even notice it, which I think

is great that you have it on yourself

211

for protection and it's more something

that you can do just for yourself.

212

Right, right.

213

That's great.

214

And have you used any

apps around tracking.

215

Menstruation.

216

I know for example, there was a new

app that just came out called We

217

Thrive that is actually specific for

adolescents with bleeding disorders.

218

Like have you ever tried I know years

ago there was the suggestion of carrying

219

around, I think they called it a

period journal, years and years ago.

220

But of course we've gone away

from paper journals in this way.

221

Have you tried any of the apps

out there that help track or.

222

Yeah, I actually really liked the

health app, just the regular health

223

app that comes with your Apple phone.

224

Okay.

225

And I tracked, it's really easy for me

because you can track your medications

226

in it as well as, Your menstruation.

227

So if you bled or spotted, and if it

was light, heavy, or medium, and your

228

symptoms that you experienced that day,

and it gives you a really big variety,

229

which I really appreciated, and you can

just check them off, which is nice, fast,

230

and easy, and it stores them up for you.

231

And I really did like that.

232

I did also try, what's it called, flow.

233

I think so.

234

I think so.

235

I did try that one, but I didn't enjoy

it as much and I found that there was

236

just too much going on in that ad for me.

237

But the really important details that

I would get from doctors or specific

238

from that day would go in a note that

I had titled special Info about Me.

239

And did you find it easier when you

were going to your appointments to just

240

kind of have that information ready?

241

Definitely because they obviously ask

you how long you've been bleeding and

242

what, like what severity your bleeding

is, and I found it really easy to have

243

it on hand so we could just cut straight

to the chase and also writing down

244

solutions and what I should be doing.

245

Was really helpful.

246

And also just to look back on that,

if I ever need any comfort, it really

247

helps me know that if something goes

wrong again, I know what to do and I

248

had the support to know what to do.

249

So that was all really helpful.

250

Actually, I did find it helpful.

251

Yeah.

252

Okay.

253

Okay, great.

254

That's good to know.

255

'cause I think others maybe

sometimes wonder like, how,

256

how will I keep track of this?

257

Is it even worth it?

258

Where do I keep track of this?

259

Does it make a difference

once I get to the doctor?

260

Definitely makes a difference

and it's definitely worth it.

261

Okay.

262

Okay.

263

Thank you.

264

So what would you want

others your age to know?

265

I think it's really important to

understand that even though to others,

266

they may think the topic is taboo and

we shouldn't talk about it, especially

267

in the settings that teens find

ourselves in, surrounded by people

268

who you may think are judging you.

269

Trust me when I say I

know what it feels like.

270

And just because it's not spoken about

it doesn't mean you're the only one.

271

Who's experiencing it and maybe you

sharing your story could help someone

272

else, just like I'm trying to do.

273

And if you're listening to this, you

should know that you're much luckier

274

than I was because Heroic is such a great

resource and I really found it late in my

275

journey, and I wished I found it earlier

because there's just amazing things

276

that can help you feel less alone and.

277

Even now that I know this portal

exists for women and girls

278

like me, I feel so much better.

279

And I feel like everything is just

getting better for women and for people

280

who menstruate with similar issues.

281

And I think that's just so important

that things only go up from

282

here and the support continues.

283

So even if you are struggling,

everyone around you is working

284

to make it better for you.

285

Thank you so much.

286

Such good advice in terms of passing

on and sharing all of these things

287

with others that might be listening.

288

I think it really does make a

difference when we share our stories.

289

It makes others feel they're not alone.

290

It makes others go, yeah, I

know what that feels like.

291

It happens to me.

292

So I think, mm-hmm.

293

It's just wonderful that you came on

today to share some of your story,

294

share some of your experiences

and, and really be a part of that.

295

So thank you so much.

296

Is there anything else before we end today

that you would like listeners to know?

297

I mean, even if you can't find someone

in your school that, or your friends that

298

can help or support you, there is heroic.

299

There are doctors.

300

There are parents who hopefully can be

there for you to lean on and get support.

301

So there will always be

someone there for you.

302

And I think that's just so important to

remember someone who will do anything

303

they can to understand and help you.

304

So it's important not to forget that.

305

Well, I really wanna thank you for

joining me today and sharing all of this

306

really valuable experience that you have.

307

Literally experienced and, and that you

were willing to come on and share and, and

308

be so vulnerable in that space because all

of the things that you said earlier that

309

sometimes it's not received well, people

don't understand sometimes the experiences

310

don't go as well as we hope they would.

311

So I just think it was very brave and

I thank you for being willing to share

312

your experiences so that others can.

313

Feel that sense of not being alone

and have that similar understanding.

314

So a big, big, huge thanks

to you for joining me today.

315

Yes.

316

And thank you for providing me with this

space where I feel safe enough to do that.

317

So that's also right back at you.

318

Well, it's been wonderful having you.

319

Yes.

320

Thank you so much.