How One Friend Makes a Difference...


We met Lizzy at an awareness event last fall - something organized as a yearly get-together each October. She was in middle school and had been recently diagnosed with POTS after the typical "years" of searching for answers. Her family came along hoping to meet others, make new connections, and to make some sense of what was happening. Afterwards, we parted ways not knowing if we would see each other before our next annual event. But it's funny how connections keep coming in and out of your life...

Soon afterwards I became involved with a family interested in helping to start the Dysautonomia International - Wisconsin Support Group - a support chapter of Dysautonomia International. One of our goals was to find a way to get an education program together that could be done in schools to promote awareness and to reduce the average of 5 years it takes to get a diagnosis.

As it turns out, Lizzy's middle school was hosting a carnival that each year supports a cause the school would like to donate to (amazingly enough the idea was started by Lizzy the previous year before her own diagnosis to help a family struggling with cancer). So, this year the carnival committee thought it was only fitting to support dysautonomia and POTS research for Lizzy. They needed someone to speak at an all school assembly and Lizzy contacted Dysautonomia International for help. It became our first step into setting up an education program for schools.

After the presentation, Lizzy and her friend Hailey got up to speak about POTS and the upcoming carnival. It was easily the most powerful moments of the assembly. Lizzy was able to share a little bit about what it was like to have an invisible illness and how it hurt when people doubted her. Hailey spoke next and it was heart warming to hear her words. She stands by Lizzy through it all. She talked about how she would answer other kids questions regarding the illness. And how often times she let others know it was not made up and that Lizzy was not faking it for attention.

In addition to moral support and fielding daily questions, Hailey also helps Lizzy with her school day routine - getting water and making sure she is drinking it, medication reminders, helping Lizzy walk when she's dizzy, getting adult help when necessary, and making sure she doesn't over do it during the day. But she also lets others know Lizzy is okay when she has an episode - which may include fainting or just lightheadedness or dizziness. She explains what is happening to others so that they aren't afraid and can try to understand. I asked Lizzy what her favorite thing about Hailey was and she said - how much she cares about others. For some people that just comes naturally. And I think it can be contagious, even inspiring to others. It is for me.

Meghan used to have panic attacks about going to school and having to explain the numerous inquiries to doubters or to those who thought it wasn't fair she had anything "extra" given to her. Kids thought it was unfair if Meghan was excused from certain activities or was given extra time. It was so moving to hear from someone that age standing up for her friend and in a way that was kind and convincing. I was taken aback by her maturity and realized we all need a friend like Hailey in our lives.

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