Advocate Part 2

Updated: Apr 13, 2021

Part 1 Overview

In part 1, I wrote about the role the Children’s Healthcare of Atlanta’s teen clinic had in teaching me how to advocate for myself. I also provided a few examples of how I have had to advocate for myself after transplant. In Part 2, I will write about how to advocate for yourself in this season of COVID we currently are living in.

A Defining Decision

Last semester, I was sitting in my graduate research methods class and COVID was just something going on in Asia. When I traveled to Florida for spring break, I still expected to be returning to class. However, over that week, things back in Georgia began to change. I checked my email halfway through spring break to find my inbox inundated with updates from UGA. Despite the large amount of emails, the university had yet to make a decision about allowing students to return to campus. As the situation intensified in Athens, I had a roundtable phone call with my family to determine if I needed to cut my spring break trip short. I already had an appointment in Atlanta later that week and it had yet to be postponed. Ultimately, I made the decision to leave Florida. Why did I choose to leave? First, I knew that if I did get COVID, I would be six hours away from my transplant team. My friend I was visiting was going back to work and I knew that they would potentially be around people who could spread COVID. I also knew that states were discussing closing interstate travel. So, I made what has become a defining decision of my life. I left Florida and found myself being ridiculed by my friend. Unfortunately, we are no longer friends. Despite this, I know I made the right decision. They could not understand what I needed, and they did not support me. If a friend cannot stand with you in the tough times, are they really your friend? This time showed me that I was on my own. I had to be my own advocate.

Don’t Play Politics with my Health

Do you wear a mask? Should you wear a mask? Is COVID really that bad? We have heard it all. Unfortunately, so many are divided on COVID that we have seemed to forgotten the ones who are truly at risk. I wear a mask because my transplant team says to. I quarantined because my transplant team told me to. While I was making the decisions that were right for me, I saw and heard others ridicule me for living in fear. At the same time, people took sides and started playing politics with COVID. This made it even harder for me to be my own advocate. While others played politics with COVID there was one thing that I would not let them do, play politics with my health. The decisions I made and the things I did to take care of myself in the early times of COVID did not settle well with everyone. I lost a friend over the actions I took. I did not leave my home for three months. I took nothing to chance and I had to take control. In many ways taking control of your own health, is the best way to be your own best advocate. In COVID or not in COVID, taking control of your health is the first step in being able to advocate for yourself and your health.

7 Rules for Advocates

1. Listen to your doctors: Listen to your transplant team, they know what you should do to keep yourself healthy and safe. While you may not like some of the things, they recommend for you, know that they have a vested interest in keeping you healthy. You staying healthy means you are not in the hospital.

2. Drown out the noise: There is so much noise about COVID. Do I wear a mask? Is this really something bad? Will there be a vaccine? There is so much noise out there that it is tempting to just listen to the noise. Instead of doing this, drown it out. At the end of the day, COVID exists and you are at risk. So, act accordingly. Down out the noise, listen to those whose input matters most and stay healthy.

3. You may offend someone... that’s OK: I know that not many of us want to hurt the feelings of those we love. We don’t want to offend anyone by the decisions we make or the things we say. However, I would challenge this view. If COVID has shown me anything, it has shown me the importance of sticking to my word and doing what I know to be right for me. Do not go out and purposely offend people. Don’t be the one who guilt trips people and takes a moral high ground. What I am saying is that you should not be made to feel guilty for making a decision that is right for you. If people will be offended by you taking a stand for yourself then so be it. Don’t be afraid to be seen as offensive. If it means you are doing what is best for you then that is all that matters.

4. Be truthful and don’t apologize: As a transplant recipient, I have had some awkward conversations with people. When I say what I need and what I am doing to keep myself healthy, I speak the truth. I do not exaggerate the situation just to prove a point. Rather, I politely state my view from my vantage point. In doing this, I have had wonderful conversations with people who mean well and just were not aware of everything going on. I have had people stick to their side and try and say I just don’t need to live in fear. When I have these conversations, I speak the truth, I am respectful, and I don’t apologize. So, speak truth, be respectful and don’t apologize for sharing your view based on your own experiences.

5. Do something: During COVID maybe you have been quarantined. Maye you have gone to work only to come home and found your social life to be a bit different. Whether you are quarantined or finding a way to adjust to the many challenges of COVID, I would encourage you to find something to do. Whether it be running/walking, reading, or spending time with your family, you can find something to do. With so many mental health challenges coming out of COVID now is a good time to take time for yourself. Go do something.

6. Don't Let the mask be a muzzle: Many of us are wearing masks in response to COVID. While this is important, you should not let the mask become a muzzle. Don't become so accustomed to wearing a mask that you forget to tell others what you need. Let your voice be heard. You can't advocate for yourself if you are silent. Don't let the mask become your muzzle.

7. Take a break: Early on, when COVID started, many of us were constantly glued to the TV or to the phone. We wanted to know the newest news updates and find out as much as we could about COVID. While it is important to stay informed, it is sometimes good to take a break. Set down the computer and phone. Take a break and spend time with those you love.

To listen to the podcast episode about the 7 rules for advocates see the link below

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