A man holds a heart in his hands, surrounded by speech bubbles showing different ways to be an advocate

It’s Up to You: Taking Control of Your Eczema Care

For 22 years, I had lived my life the way my condition had allowed me to.

When it came to school, I skipped classes when my eczema would flare up. In choosing my hobbies, I decided to dance instead of play softball because of how the sport would affect my skin. In regards to my relationships, my eczema held me back from creating authentic and vulnerable connections. I even chose what career path “made sense” according to my eczema and which industries would allow me to cover up my skin as much as possible.

When did I stop letting eczema control my life?

As you can see, eczema dictated what I could do, wear, go, and even think. It wasn’t until 2014 when I decided that enough is enough, and I get to live my life the way I want to live it, not how my condition had allowed me to live it. This was when my journey of self-advocacy began.

What is self-advocacy?

According to Google, the term self-advocacy is “the action of representing oneself or one’s views or interests.”

Let’s break this definition down:

How did my self-advocacy journey start?

Self-advocacy is an ACTION. My self-advocacy journey began when I took action - when I decided to Google “eczema” for the first time in November of 2014 because I was fed up with how I was feeling. This journey continued as I tried different modalities like dieting and exercising to bring me healing. Little did I know that one action I took in 2014 would lead me to where I am now - a patient leader and advocate for my community. What action(s) can you take to begin your journey of self-advocacy?

Will anyone else fight as hard for my care?

Self-advocacy is the representation of oneself. Not of others. For 22 years, I followed what my doctors told me. I based all of my decisions on the decisions that others thought were best for me. Only I know what is best for me, and only you know what is best for you. I’ve learned that no one will fight harder for my health than myself. If I don’t take the initiative to represent myself and stand for my health, who will? Start advocating for yourself first, and you begin the journey of advocating for others.

What does it say about you?

Self-advocacy is self-love. When you can represent yourself and stand for who you are and your needs, you are choosing self-love. You are saying, “I love myself so much that I am worthy of being seen and heard no matter the costs.”

How can you get started?

Self-advocacy is simply a choice away. You don’t need to know every answer to every question. You don’t need to go to school and have a particular degree. All you have to do is decide that you are worthy of representing yourself now. That you and only you know what is best for your body, regardless of what others around you may think.

Here are some steps to practice self-advocacy and guide you into this journey of self-love:

What are your health priorities?

What are your needs? What do you want? What do you desire for your health? Answer these questions with specificity. The more specific you are, the better you can verbalize and share your vision with others who, in turn, will be able to best support you.

What questions should you ask?

I can’t emphasize this step enough. If we don’t become curious about how we can attain what we want, then we will not arrive at our desired answers.

Things can get confusing and overlooked when it comes to health, such as understanding our insurance, treatments, resources, and more. So be sure to ask questions, especially if you don’t understand something.

What should you do with differing viewpoints?

We are unable to truly advocate for ourselves without the views of others. The perspectives and choices of other people, including our doctors, are what allow us to get clear with who we are and what we stand for. But contradicting views doesn’t make one party “right” and the other “wrong.” That’s why it’s important to respect other people’s beliefs and listen with an open mind and heart to learn and get clear with our desires.

How can you better communicate your needs?

There is a way to communicate your needs and perspective so that it will empower other people to listen and support you. How? Through clarity, kindness, and assertiveness. Our history is a clear example of what happens when aggression is used to promote self-advocacy - wars happen, violent situations occur, and more damage is created. When it comes to our health and expressing our needs, do it with love, kindness, and assertion.

When you choose self-advocacy, you choose responsibility, self-love, and worth. Such a journey will empower you beyond what you could have ever imagined and will actively align you to the forces of healing.

Do you consider yourself to be an advocate for your health?

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