Arthritis Ashley’s Speech at New Brighton Area Middle School

Here is a video of the speech I did at New Brighton Area Middle School:

View on YouTube.

View on Facebook.

Some photos from the event can be seen, here.

A rough transcript of the speech is below. (I ad-libbed and improvised a bit during the actual presentation.)

Here are the photos/slides that were referenced during the speech:

Transcript of Speech for 2/6/17  (Rough Version)

Hi, guys! Listen, I know it’s early, and it’s Monday, and we were all up late watching the Super Bowl.

This will make me sound super-old, but I was your age once, and so I know that at least half of you probably have no interest in listening to me talk, and are maybe even thinking about how you’re going to make fun of me once this is over.

But, I ask that you just give me a chance to tell me story, because I think, and I hope, that you’ll gain at least something from it.

First, bear with me while I show you a few pictures. You might think some of them are kind of cool, and I promise that they have a purpose aside from me humble-bragging. (Show photos, narrate slideshow.)

See, there’s cool things like my book-signings, and red carpet events, and my husband Mike appearing on NBC’s American Ninja Warrior. There’s cool things like the gazillion concerts I go to and many travels.

Now, let me show you the things that people don’t see on social media, in magazine articles, or even sometimes in my daily life. (Show photos, narrate slideshow.)

These are all the not-cool things like brain surgery, biopsies, shots, and IV infusions of potentially-dangerous drugs.

Oh, and there’s this. Not super-fashionable.

(Step outside of podium and show brace and cast.)

What’s my point to all of this?

My point is that you never know what someone is dealing with privately, in their home life, and behind closed doors. We’ve all heard anti-bullying messages and being in middle school you’ve probably heard for your fair share of them.

But the reason WHY we shouldn’t judge or bully others is often an afterthought. We hear about why bullying is bad, or we are told that we should be kind and then we’re lectured about tolerance and inclusion, but we aren’t always having it explained to us in a way that puts it in context of an actual person being on the other side of it, and why we should just be nice.

I really like Ellen DeGeneres and at the end of the Ellen Show, she always says “be kind to one another.” I have to agree with her. It’s just that easy : be kind.

On that same note, my favorite quote is “be kind, because everyone is fighting a battle you know nothing about.”

And this is my point. Here are some photos of me when I was around your age. (Show slide)

When I was in middle school and high school, I had a fun group of friends and always doing something fun and social. I was super-obnoxiously-involved in extracurricular activities at school and I played sports: I dabbled in basketball  in middle school, was a cheerleader in 9th and 10th grade, and I was a softball player from t-ball in kindergarten all the way through age 16. I even rallied my very small high school to start a fashion club and a dance team, neither of which really ever took off. But I was active — or at least I pretended to be.

You see, I put up a front in order to fit in, as so many of us do. I was hiding excruciating and sometimes intolerable pain caused by an autoimmune inflammatory disease called juvenile idiopathic arthritis, an illness that is painful, and affects the whole body. It isn’t contagious, but it is disabling and incurable — a disease you have for life. It’s an illness that, simply put, is your body literally attacking itself. I would sit with the popular girls and wear the nice clothes that were stylish in those olden days and I kept up appearances.

I still do that.

But my reality outside of the appearances was far different. It was a lot of doctor’s visits, and needle jabs, and pain. It was people making fun of the way I walked and mocking my limp. It was sickness and being fatigued and tired all the time. I kept up my grades but I racked up tardies or missed school because I was so sick. I didn’t tell many people about it because no one understood. Becuase “arthritis” was in the name of the disease, people thought I was faking because arthritis is an old lady disease.

I kept it hidden. Now, I’ve racked up several other diagnosis — it isn’t at all glamorous. I have dozens of medical diagnoses. Literally, dozens. I find myself sometimes putting up a front and, sometimes, even though I am an adult, being bullied.

I’m lucky to have a good support system, but not everyone has that. I’m lucky that I found my gift for writing and turned my pain and my sickness into a career as an author and an advocate. I used writing and social media as ways to cope with very difficult health problems.

But again, not everyone is so lucky.

So before you utter an unkind word to or about someone, take a moment to think about problems you’re facing in your  own life. And think about if you’d want others mocking you or making fun of you for them. Maybe you’re lucky to not have any problems now, but I promise you that you will someday, at some point in your life, whether they are big problems or small ones. And what you will want most in that time, when you do face a problem or a struggle, is kindness and compassion. Not mocking or locker-room talk, not mean girl stuff or bullying. Not gossip. Not inside jokes. Not online harassment. 

You’ll just want people to be nice.

So, my advice would be just totreat people as though they are dealing with something you don’t know about and can’t see — even if they aren’t. Just extend that kindness, regardless. You don’t know why someone is quiet, or why someone becomes a bully themselves, or why someone misses school. Because maybe they are struggling silently. Maybe like me it’s an illness. Maybe a person’s parents are fighting all the time. Maybe one of your fellow students doesn’t know where his or her next meal is coming from. Maybe there are families in your community who are on food stamps or who get their meals from the food bank. Maybe someone is being abused at home. Maybe someone is struggling to find their identity or is depressed or is contemplating self-harm. Maybe someone just feels lonely or rejected or outcast.

Be nice. Remember that not all illnesses and disabilities are visible, just like not all problems in life are visible. People have family problems and money problems and emotional problems that you might not know about or see on Instagram or Snapchat.

This brings me to my next point: we all can fall into the pattern of comparing ourselves to one another on social media. What you see people post on Facebook and Instagram and Twitter is not always their truth. Some people only post the best moments of their life and the best versions of themselves. Don’t compete and compare your worst moments with the moments someone presents at school or online.  Those are usually people’s very best moments. Filtered and edited.

I need to take my own advice here, becuase i do it, too. I think we all compare sometimes and get caught in that trap. To be honest, it doesn’t do anyone any good.

And if you’re struggling, reach out to someone.

Sometimes, you don’t realize how good a friend someone actually is until you need them. Sometimes, you don’t realize how much you need a family member until they are gone. And sometimes, you don’t realize the value of kindness until you are well out of middle school and high school. But the earlier you learn it, the better — because being kind, and authentic, and being yourself will get you far in the world. It never goes out of style and it is always a winning characteristic to have. People like people who are real and authentic and happy and kind. So be positive and spread those good vibes.

There are so many ways to spread good vibes and positivity. I’ve gotta say — I can’t say enough about the arts. If you are going through any kind of difficult time whether it’s an illness or injury, a problem with a friend or a relative, or any kind of issues with self-doubts or self-image, then get creative. That’s what I did. When I was younger, it was fashion design and writing. Now it’s mostly just writing. But sometimes I paint, or I dabble with my ukulele, or I find new hobbies like astronomy. And I’m obsessed with animal welfare and my 5 pets. (show slide of the pets)

I  also really love helping people and volunteering, being charitable and giving back.  Sometimes when you take the times to focus on loving others, it takes the focus off of your own problems, and puts things into perspective.

Writing my books has been a great creative outlet for me and a great way to cope with my health problems, which aren’t pretty. If I’m being honest with you, I almost passed out from infusions a couple of weeks ago and I have a jug of pee in my car because I have to do a 24-hour urine study. I have as many scars as I do tattoos. It is what it is. What you see on the outside, blonde hair and makeup and a nice handbag, doesn’t always match what’s going on inside. I always keep smiling, but it doesn’t mean I’m not sick or hurting. I’m strong — maybe not athlete-strong, but strong — but there are many nights I cry myself to sleep because of the physical or emotional pain that comes with a lifelong illness.

And so my message is this: remember that people can smile through pain. Just because someone is smiling or presenting their best face to the world doesn’t mean that they aren’t struggling. So take the time to get to know your peers and just be nice.  One of my biggest regrets is that there were people in high school and middle school that I never got to know, and I wish I had. It’s great to get outside of your bubble and get to know people who you don’t usually talk to or hang out with. Even as an adult, that’s a great thing to do.


Now, if there’s any time left, I’ll open up the floor to any questions or comments. You can ask me about my health issues or my books or whatever else you’d like. If not, then let me just say that I’m so thankful that you all had me here to speak today. If you want to follow me on social media, here’s my info (show slide) and if you took any pictures today you can share them on social with hashtag #arthritisashley.

Thanks, guys!

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