"Let's Talk."

"Talking to people, one-on-one, is an extremely powerful form of communication, because it is personal and genuine. If many people with VWD and members of their families make a concious effort to speak up, it could have a big impact on educating the public." ~Renee Paper "A Guide to Living with von Willebrand Disease"

We've all had to talk about our bleeding disorder at one point. Sometimes it's voluntary and you're open to sharing, and other times it's just downright embarrassing and you give a 5-second explanation before changing the subject.

Personally, I've always been pretty open about my bleeding disorder. When I was little, I told most of my friends about it, and it was no big deal. But, as we get older, we all start becoming a little more self-conscious. In fact, the last time I was at the women's retreat that I go to, some of the teen girls were talking about how to tell their friends about their bleeding disorder. I mentioned that all my friends knew, and dealing with VWD was quite a bit simpler because of it!

But...I'm not always so unashamedly open. :P

For example: I was recently at a meeting with all the teens I'm graduating high school with this May. After the meeting ended we all sat around and talked about what we could do together as a group. And what was the first thing everyone wanted to do? Paintball. I sat there and thought: Great. Now I won't even get to hang out with everyone!. One of the guys in the group must have noticed I wasn't jumping on board because he looked at me and asked: "What's wrong?". The majority of the group stopped talking and looked at me. I kind of sank back in my chair a little and said: "Well...I...I'm not exactly allowed to go paint-balling." (BTW--that was a STUPID answer. I see that now. :]) By the time I finished dishing out that little tidbit of information the rest of the group was looking at me. The guy that had asked me in the first place got the really weird, disbelieving look on his face and said: "What? Why not?". I pulled at my jeans and did my best not to blush (a pretty failed attempt): "Well, I have a bleeding disorder. And I'm not really supposed to do stuff like paintball.". The guy looked super embarrassed and said: "Oh my gosh, I'm sorry! Ok, never mind. We'll do something that everyone can do. Sorry."

There were so many things wrong with the way I handled that situation. First, I was embarrassed about the fact I had a bleeding disorder, and second, I did absolutely nothing to explain why I couldn't play paintball. I had a great opportunity to educate someone about a rare bleeding disorder and instead I stayed quiet because I felt weird. Looking back, even late that same afternoon, I felt so bad. Where was that courage and self-confidence I'd just been talking about? One word: FAIL.

Later on at the meeting after everyone had left, the same guy approached me and asked: "So, like, what is that?" I knew he was referring to the bleeding disorder, and, still feeling embarrassed (I could kick myself for this), I said: "Oh, well, I bruise easily. So...paintball is kind of a 'no-no'."

I could've said: "Well it means that my blood doesn't clot right, so it takes a long time for me to stop bleeding." or "It's called von Willebrand's Disease and it means my blood doesn't clot right so I bleed for a long time." But what did I say? "I bruise easily." Ugh. What kind of an explanation is that?

Anyway, I tell this story because I know exactly how it feels to be embarrassed of your bleeding disorder. I know the term "chronic disorder" sounds creepy and weird, and I know sometimes it's hard to see yourself as perfect the way you are.

I should've handled that whole conversation in a mature, self-confident manner. But I let my nerves get the best of me. :) Will it happen again? Hopefully not! I'll try educating myself even more and instead of waiting to be asked about my bleeding disorder, I'll be open about it from the beginning!

Coming up, I'll have even more posts on how to talk about your bleeding disorder with your friends! And, as always, I'd love to hear your stories and techniques and advice! Feel free to leave a comment below and share!

Much love to all of you!

<3, Jamie

Independence

"They paint their own pictures then they crop me in,
But I will remain where the top begins.
I am not a word, I am not a line...
I am not a girl that could ever be defined.
Cry my eyes out for days upon days,
Such a heavy burden placed upon me! 
But when you go hard your 'nays' become 'yays'!" 
*"FLY" Lyrics by Nicki Minaj and Rihanna*

We all want independence. Sometimes, when struggling with a health issue, we see ourselves as hopelessly dependent on our parents, our nurses/doctors or our treatment centers. We can't see ourselves as strong and independent women. We see ourselves through the lenses of our illness.

Today, I want to write a post on independence, bleeding disorders and hope. I'm sure every single one of you reading this post has a story to tell. A story of battles won and tears shed and burdens carried. What got you to the place you're at now? How do you define yourself? Or, rather, what do you allow to define you? How do you find the strength to face the challenges your bleeding disorder presents? When you look at the girl in the mirror...do you admire her courage?

When I was young, (about 9) I was diagnosed with von Willebrand's Disease type 1. I grew up knowing about my condition, though it took a while to understand it. I needed to hold Mama's hand when the nurse ran tests or drew blood. I closed my eyes and bit my lip and cried when my parents took me to our HTC to be tested for various things. I was dependent on them. I looked to them for strength and assurance when I was scared. When I was hospitalized after having a baby tooth pulled at the Dentist's office (before I was diagnosed), I was terrified of being alone or facing the tests without my parents. The first time I had an IV, I sat in the chair trying to focus on the Dragon Tales episode playing on the TV on the opposite side of the room. I tried so hard not to cry, and all I could think about was how much I wanted to get up and leave.

My dependence was totally normal. My fear, well, it was sometimes irrational. :) But I was a little girl who didn't understand how to talk to Doctors or ask about medicines. My parents did their job by taking care of me and making sure I had every appropriate treatment and medication. They did it because I wasn't old or mature enough to do it myself.

Now, however, it's a different story. I'm 18 years old, and a high school senior getting ready to leave home for college this August. My condition is my responsibility. I'm responsible for talking to and educating my friends, eating right, exercising, wearing my medical ID bracelet 24/7 and talking to my Doctors about how to further take care of myself and my bleeding disorder.

Gaining independence takes time. It took me about 14 years. :) Looking back I see how decisions I made led me to this independence. From my own experience, I'm going to list a few of those crucial decisions:

1. Getting over my fear of needles.
*This might be just me. But when I was younger, the mere mention of a blood test or IV would make me sick. One time, my parents told me we were going to the HTC and that I was going to have to get some blood drawn. I stressed so much and made myself so sick that when we pulled up to the HTC parking lot I threw up in the car. For me, getting over my fear of needles was a huge step in gaining my independence. When I had blood drawn, I started smiling and talking to the nurse and doing absolutely everything to keep my mind off the needle sticking from my vein. I stopped asking to hold my mom's hand and I started asking the nurse about infusions and the tests she was running. I made an active step to better understand what was going on and therefore desensitized myself to needles. The last time I had an IV (late Oct./2011 I think) I sat and watched the nurse mix the factor and made it a point to remember the steps. I watched her stick the needle and took slow, deep breaths. I told myself that I was a strong, brave, independent young lady. I told myself I could handle it. And I did. :)

2. Educating myself about VWD.
*Until you understand your bleeding disorder, you will always be dependent on those around you. Until you can confidently talk to doctors and nurses and friends about your condition, you'll always be needing someone to explain and stick up for you. Learn as much as you can about your bleeding disorder! Understand your limitations and your treatments. You be in control of yourself. Find camps or retreats and meet other people your age with bleeding disorders! The most I ever learned about VWD was at a Women's Retreat in my home state. My mom and I went, and I walked away with SO much information! Plus, I met other girls who knew exactly how I felt. :) I formed a support group at that retreat that I will always have! (And I kept going. :) My next trip up is at the end of April!)

3. Be open and willing to talk. 
*My friends know exactly what my bleeding disorder is, how it affects me and what I can and can't do. They understand when I have to excuse myself from a paintball party or a volleyball game. Telling them about my VWD and educating them on how it works was one of the key parts of my independence. Not only was I raising awareness, but I was overcoming my fear of being "the odd one" and sticking up for myself!

These are just 3 examples, and I'm sure there are many more! You all probably have your own lists of keys to independence!

Now, I'm by NO means encouraging everyone to sever ties with your family or doctors or treatment centers. Those people are they to help you! Without them, we'd all be in a sorry state. :) What I'm promoting is the idea that your bleeding disorder is your responsibility. Don't cast it on someone else. Learn how to stand on your own and educate yourself and be an advocate! Be independent and confident! Look at yourself in the mirror and know that you have the strength to overcome your fears and doubts and be yourself! Don't let your bleeding disorder shape you...let it be a part of you that is unique and beautiful. :)

Much love to all the girls fighting this battle with me! We can do it, ladies! Have faith and celebrate your independence and your beauty! 

Self Esteem and Your Bleeding Disorder

"I'm so ugly."


"Maybe if I were more normal, I'd have more friends."


"I'm so embarrassed...I can't say anything." 


"Why can't I be like everybody else?" 


Self esteem issues.

Every teen has them, especially girls, and sometimes we let those storm cloud thoughts steal our sunshine. And sometimes, living with a bleeding disorder can make it even harder to keep a positive outlook about the face in the mirror staring back at you. Sometimes bruises on your legs ruin that summer tan you've been working months at. Or a nosebleed crashes your party in the middle of an outing with your girlfriends. Or you have to miss a swim party or a sleepover because you're on your period and you're afraid you'll bleed all over yourself.

Every single one of those instances has ruined my day at one point or another. Some more than once. And it always manages to get me down...way down. I'll sit down and cry for a while, wishing I could be normal and go play paint ball or swim with all my friends...but it never changes anything. And it always makes me feel worse.

A lot of Doctors and Nurses will tell you that you need to keep a positive outlook on life. And they're right. :) Why? Because sometimes, honey, positivity is all that's gonna keep you from smacking into rock bottom. You can't be "normal" like everyone else.

But hey, normal is overrated anyway. :)

Whenever you're having those tough days, try something like this:

*Give yourself a pep talk in the mirror before you leave for school or work
*Blast your favorite playlist of "feel good" music and dance around for a while
*Put on your best outfit, just to make yourself feel a little better
*Treat yourself to a hot bath or shower, maybe with a little ice cream to snack on
*Call up a friend and talk, maybe even cry a little, just to get it off your chest (even better would be to have a friend who also has a bleeding disorder. :) Just to have a little common ground!)
*Read your favorite book or watch your favorite movie

I like to give myself mirror-pep-talks and sing out loud to all my favorite feel good tunes. Try finding a routine that works for you!

And always remember that you--your bleeding disorder included--are beautiful. And special. :) So give yourself a pat on the back for being tough enough to make it this far!