Why I Will Continue My Advocacy For Ehlers Danlos Syndrome

Why I Will Continue My Advocacy For Ehlers Danlos Syndrome

If I don't, who will?
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The first thing you learn when you're chronically ill is that people will talk. Rumors will spread about your illness. People will judge you for aspects of your life that are out of your control. You will feel alone. I first experienced this a year ago when I was diagnosed with Ehlers Danlos Syndrome.

This gossip can destroy a person. I have seen people in online support groups on the verge of giving up because of rumors. I have experienced losing friends and people I love. I know the impact that one simple statement can have on a person's future. The gossip doesn't matter in the future though. You will move away. You will find new friends. You will start fresh somewhere else. What does matter is how you respond.

In my experience, there are two ways that people tend to go when it comes to responding to this gossip: they silence their illness or they advocate. I chose the latter, and I will continue to choose it every day.

The truth is that so many people are too scared to speak up about their illnesses. They feel lost in their own body, yet they don't want to tell anyone in fear of their reaction. I know people like this. They keep quiet on social media, they avoid the subject, and they live their lives like their illness does not exist. I don't blame these people for choosing this approach. I know how much worse it makes everything when you dwell on illness, so I understand the logic behind this decision. My advocacy is not dwelling though.

My work as an activist spreads awareness. It encourages more people to speak up about their experiences. It ends the stigma surrounding rare diseases like my own. Most importantly, it makes people feel less alone. I have met hundreds of people who I can now call friends through my writing. These are people who could relate to my writing and wanted to share their story as well.

This experience in sharing my story over the past year has taught me so much. It has taught me that even when you feel alone, there is somewhere in the same situation. Even when you feel too rare to be taken seriously, you can find someone with your same conditions to relate to you. Even when you feel like giving up, there is still a reason to hang on.

I will continue to spread my story. Sure, I have received bad comments. Yes, I know that it draws attention to my disability for future opportunities. Yes, I know that it may scare people off in the future, but I am willing to live with those "what if's". For every what if, there is a person that doesn't give up because of something myself or another person wrote. For every what if, I have helped a person better understand their diagnosis. For every what if, I have moved a little bit closer to a cure for EDS: a little bit closer to a brighter future.

Cover Image Credit: Katy Brennan

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I'm A Woman And You Can't Convince Me Breastfeeding In Public Is OK In 2019

Sorry, not sorry.

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Lately, I have seen so many people going off on social media about how people shouldn't be upset with mothers breastfeeding in public. You know what? I disagree.

There's a huge difference between being modest while breastfeeding and just being straight up careless, trashy and disrespectful to those around you. Why don't you try popping out a boob without a baby attached to it and see how long it takes for you to get arrested for public indecency? Strange how that works, right?

So many people talking about it bring up the point of how we shouldn't "sexualize" breastfeeding and seeing a woman's breasts while doing so. Actually, all of these people are missing the point. It's not sexual, it's just purely immodest and disrespectful.

If you see a girl in a shirt cut too low, you call her a slut. If you see a celebrity post a nude photo, you call them immodest and a terrible role model. What makes you think that pulling out a breast in the middle of public is different, regardless of what you're doing with it?

If I'm eating in a restaurant, I would be disgusted if the person at the table next to me had their bare feet out while they were eating. It's just not appropriate. Neither is pulling out your breast for the entire general public to see.

Nobody asked you to put a blanket over your kid's head to feed them. Nobody asked you to go feed them in a dirty bathroom. But you don't need to basically be topless to feed your kid. Growing up, I watched my mom feed my younger siblings in public. She never shied away from it, but the way she did it was always tasteful and never drew attention. She would cover herself up while doing it. She would make sure that nothing inappropriate could be seen. She was lowkey about it.

Mindblowing, right? Wait, you can actually breastfeed in public and not have to show everyone what you're doing? What a revolutionary idea!

There is nothing wrong with feeding your baby. It's something you need to do, it's a part of life. But there is definitely something wrong with thinking it's fine to expose yourself to the entire world while doing it. Nobody wants to see it. Nobody cares if you're feeding your kid. Nobody cares if you're trying to make some sort of weird "feminist" statement by showing them your boobs.

Cover up. Be modest. Be mindful. Be respectful. Don't want to see my boobs? Good, I don't want to see yours either. Hard to believe, I know.

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My Boyfriend Works Out Religiously And I Don’t, But He Loves Me For Me

"Hey babe, I'm headed to the gym. I'll text you when I'm done."

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I have recently changed my relationship status from, "eating ice cream alone and watching 'The Bachelor'" to "eating ice cream and watching 'The Bachelor'... with my boyfriend." I must say I am #blessed and beyond lucky to have such a loving and supportive bae.

Like every new relationship, you have to get to know each other. Their likes and dislikes. Their quirks and pet-peeves. But one of the more exciting things you get to learn, especially if you go to school with them, is how they eat and take care of themselves.

My version of "self-love" looks like sleeping in until 12:00 p.m. and having a hot cup of coffee while I curl up in bed and scroll through the 'gram. In a perfect world, I have a pastry and no responsibilities. But like the Rolling Stones once said, you can't always get what you want.

My boyfriend, on the other hand, is bright-eyed and bushy-tailed at 8 a.m. every morning ready with pre-workout in one hand and a kick-ass attitude in the other. Let me tell you the Lord must have known what He was doing when He brought him into my life.

I have to say that initially, I had a lot of self-doubts when we were first together. I was worried that he wouldn't like me because I am not some fitness model on Instagram that sells protein powder for a little extra cash (I'm not salty lol). I was convinced that every time he went to the gym he would see all these fit girls and wish I was more like them.

It took me a little while to voice these concerns to him because even though I'm a comm major that doesn't mean I am a pro at communicating in a relationship. Immediately once I shared these thoughts, I knew that they were all for nothing. He instantly reassured me that what drew him to me was not my outward appearance (but he did say I'm a sight for sore eyes) but my personality and love for the Lord.

I think this is a topic of conversation that can be so important to have in a relationship. It is great to be able to communicate to one another what you appreciate and admire about each other. One thing I have learned is that you can't read the other person's mind, so you have no clue how they feel about you unless you ask or they show you.

Every woman struggles with loving the body they are given. With social media today, it is so easy to get lost in the "perfect" idea of the female figure. Ladies, there is so much more to you than looks and dress sizes. You have character, talents, passions, dreams and they all make you the woman you are today.

Find a man that will see all of those traits and unique qualities you possess and encourage them. There is nothing like being with someone that loves you for who you are, not what you look like, or how many miles you can run on the treadmill.

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