Speak Up


This story was initially published on Sweet Lemon Pies, a blog and website by an amazing advocate, Karen Richards. I’m honored to have had the opportunity to write something for her.

Go check out her website and blog!
Doctors don’t always know best. They are human, and sometimes they make mistakes.

Before I got sick, I trusted doctors much more than I do now… I believed that they would always find out what was wrong, and be able to use effective treatments.

I have come to find that’s not always the case… In fact, I would say that it is rarely the case.

Medicine has come a long way in the past 150 years, but there’s so much farther to go. Doctors don’t always know what is going on or how to treat it, and so as a patient, you have to be your own advocate in the medical world.

I’ve had doctors who don’t listen, who have downgraded my concerns, and have made me feel like I was not deserving of care.

Throughout this, I’ve had to learn to speak up for myself. Speaking up has helped me in all aspects of life, not just with my health.

These are some things I have learned to speak up for:

When you’re discussing anything with your physician, don’t take everything said at face value.

Ask questions!

“Does this medication interact with my current meds?” “What side effects should I be worried about from this treatment?”

Bring literature.

It’s easy to find studies online, and for some strange reason, doctors respond better to peer reviewed papers than to their patients…

Communication is key.

Doctors won’t know how to help if you’re making your symptoms sound less than they really are. I’ve done this. I’ve made it seem like things are better than they are, because I don’t want to annoy the person treating me, or make it my fault because I wasn’t getting better.

If you aren’t feeling better, maybe something needs to change.

Doctors won’t know this unless you tell them. Of course, there are barriers to change, such as lack of insurance coverage. However, in many of those cases, there are options, but the doctor won’t be able to assist if they don’t know what’s going on.

Remember: you are the one who has to deal with the side effects and the repercussions of treatment, not them.

It’s easy for someone to prescribe something and say, “See you in a month.” But you are the one who has to live with it every day.

When it all comes down to it, human error is just as prevalent in medicine as it is in any other profession.

We expect medical professionals to be perfect and mistake-free, and they’re not. Your doctor’s mistakes might be for a variety of reasons, but mistakes will happen.

Do your research. Let your doctor know when you don’t understand or agree with something that is said.

Speak up.

It can be incredibly difficult to disagree with the person in control of your medical destiny, but even forcing them to take a second look at something complicated can prevent and lessen the change of those mistakes being made.

When Silver Linings are Hard to See

I’m having a rough day. As one of my best friends would call it, an “I wish I weren’t sick” day.

Thanks for the phrase, Liv 🙂
 
 Most of the time, I think I handle being chronically ill and all the baggage (sometimes literally)  that comes with it fabulously.  After all, what am I supposed to do? When illness is a huge part of your life, you find a way to live with it. I do things while in pain, because if I waited for the pain to subside, I might never leave my bed. I try my hardest to be cheery, even when I feel like crap. Those that love me can generally see right  through my false cheer, and even more on a difficult mental day.
On the “I wish I weren’t sick” days, everything feels a million times harder. It all adds up- pain, nausea, fatigue- like an overdrawn back account you have to pay off sometime. On these days, it’s really hard to hold it all together.
It’s okay to not be strong all the time. It’s okay to spend a day doing nothing, or doing nothing but calming things. We spend so much time taking care of our bodies, I think sometimes we forget that we also have to take care of our minds. So if you’re having an “I wish I weren’t…” day, practice some self-care. Take a bath, watch a funny movie, put on fancy makeup just for the heck of it. Don’t think you have to focus on the silver linings and the collateral positives one hundred percent of the time- being positive all the time is impossible, especially when you don’t feel positive.

Today, I’m sad about my pain, I’m sad about the life I once had….and all of that is perfectly fine. 

#howdoyouseeme

The video begins with Olivia Wilde, a white, able bodied actress, doing all these lovely things in her life. She runs, she hangs out with her family- she looks happy, healthy, and content.

“I see myself as a daughter, a sister, a best friend. As a person you can rely on. I see myself meeting someone that I can share my life with. I see myself singing, dancing, and laughing, until I cannot breathe. And also crying sometimes.”

The voiceover continues throughout, a message of possibilities and inspiration, and at the end, says “This is how I see myself. How do you see me?” And at this point, you see the only shot in the entire video of AnnaRose, the girl with Down Syndrome who was speaking.
Now, the message is that you should see the person first, before the syndrome, and to ask the viewers how they see a person who has Down Syndrome- as a person first, or as the disability. And it’s an extremely valid question.

However, this video, designed to promote World Down Syndrome Day, has a major flaw.

AnnaRose could have done all of those things herself. By putting in a thin, white, famous, able bodied actress to replace her, you erase the disability. Do disabled people need to see themselves as able-bodied, in order to be seen? Do we need to be seen as able bodied, in order to be seen as people first? Can we only be successful, beautiful, happy- if you first completely erase our disabilities? This actress with Down Syndrome is capable of doing everything you see an able bodied actress doing. Why should she have to first erase her disability in order to do so?

This is an assumption that is deeply engrained: that someone with a disability could not possibly be happy or whole.

And it’s dangerous.

A letter to my disease

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Dear illness,

I never knew that you would come for me. We all know about illness, it is the elephant in the room. Yet somehow, we always assume it will happen to “someone else”. The trouble is, we are all “someone else” to the rest of the world. When I joined the ranks of those forced to shoulder you, I realized I couldn’t depend on this life happening to others.

You came at an unfortunate time. I was at the cusp of life, supposed to be healthy and free. No one who has not tasted this world for themselves imagines that someone who is this young should be sick. You aren’t fair. You aren’t right. But you are what happened.

And my life today is very different than that of my peers- but that’s okay. Because I have learned to savor the moments where I can breathe without pain. To walk when I can, and when I can’t, that’s okay too. You have taught me that sometimes crying is the only way to heal.

You took so much that I would give a lot to get back. You took my love of sports, my ability to eat, some days even my ability to move. You’ve taken so much more. And I hate you for that. But because of this, I am grateful for the little things. In a few years, those are the things I want to remember. How despite you, I found hope, and happiness, and joy. I have learned to find the silver linings, even when it never seemed to stop raining.

You’ve showed me how fast life changes, but you’ve also shown me how to live. That sometimes, you should take the hurt later if it means you get to walk on the beach. That when you are living seconds at a time because of how much it hurts, remember that you will make it out the other side. That live isn’t measured in years, and months, or even days, it’s measured in heartbeats, and kisses, and prayers.

So illness? Thank you. Because of you, I know what it is to be brave.

 

Sincerely,

The girl who’s kicking your ass.

This was also published on The Mighty.

Why I Appreciate The Fault in Our Stars and Red Band Society

the-fault-in-our-stars-quotes-ftr

I belong to a community I never wanted to, but that has changed my life in ways I cannot even express. I am part of the group of young adults and teenagers who have chronic illnesses, and are fighting these diseases constantly. Unfortunately, as with any situation, it’s difficult to understand what someone is going through if you haven’t gone through it. I met my best friend through my illness. I have also met so many other fabulous people who have helped me through this journey. I read The Fault in Our Stars by John Green before and after I got sick, and empathized greatly with the main character, Hazel. I watched the movie when it came out in the theatre with my best friend. Similarly, I was ecstatic when I discovered that there would be a TV show, (Red Band Society by Fox) about teenagers in the hospital. I was in the hospital when it came out, and I watched the episodes beneath the glow of my IV pole.

 

However, not everyone in the chronic illness world shared my views. Many chronically ill teens and young people were upset by the glorification of illness, and how it forms a very untrue portrait of chronic and critical illness in the public eye. And I agree- the TFIOS movie and Red Band show are both inaccurate. Devastatingly so.

 

The characters in the Red Band Society make the hospital look like a party, complete with beer, rooftop fires, and romance. I’ve spent over 5 months in the hospital over the past twelve, and (spoiler alert) I’ve never been to an awesome rooftop party, and I’ve never fallen in love. The Fault in Our Stars, especially the movie, makes terminal cancer look like a literal walk in the park, complete with dream vacations and a star crossed love story.

 

Yes, there is a lot of inaccuracy and drama in these fictional stories about illness. But what are we supposed to expect? This is Hollywood. Everything is dramatized to look much larger than life. There are very few movies and TV shows I have seen that aren’t glorified. I hate to say it but it’s true: it’s hard to sell a story that shows real life.

 

But what is the alternative to having these stories be blown up larger than life for the big screen? Not showing them? Keeping everyone who doesn’t have a link to these diseases in the dark? So many people have no idea that young people can get sick. Teenagers are supposed to be at the pinnacle of health, the topmost point of physical excellence. Even doctors sometimes seem to have difficulty believing that I, a sixteen year old, am totally dependent on a feeding tube for survival. Yet I am not alone in my situation. Shows like The Fault in Our Stars and Red Band Society spread awareness. They show people that there are teenagers who are not healthy. They show that there are diseases that modern medicine cannot fix- and we need awareness to find solutions.

 

This article was also published on The Mighty.

Welcome!

Welcome!

 

I’m a student who has been dealing with chronic illness for almost three years now. I love superheroes, bright lipstick, and loud music.

My goal is  to translate my own experiences into something that can help others. This blog is one way I hope to do that. I also work with several organizations that hope to make a real difference.

My life has changed in immeasurable ways because of chronic illness, but it is not all I am. It is not all I will be, and my future is not defined by it.

Whatever demons you are fighting today, know that you are stronger than them, and that you are not alone. And if you are, like me, an actual mutant, hey, maybe there’s a place at Xavier’s school. (A girl can dream, right?)

Kudos to you if you caught the reference.