Advocacy 101: Each One Teach One

Advocacy was not the first thing that came to my mind following my diagnosis of end-stage heart failure. In fact, it was probably the furthest thing from it. However, advocacy plays a role during every stage of a person’s healthcare journey. It is important at the beginning (even before diagnosis) when making sure your concerns, or overall health is properly addressed. It is important at the time of diagnosis when determining who will provide your care. Following diagnosis, it is important to make sure your doctor is managing symptoms and treatments. Most importantly, your advocacy may not only affect your outcome but the outcomes of others facing similar challenges. Unfortunately, a lot of people do not know what advocacy looks like or how to do it. So, let’s start with the benefits of advocacy and understanding that you only need to follow the “each one, teach one” method to start.

Sharing is (self) caring

Talking about health challenges may not be easy. However, when you share your story with someone else it helps in a lot of ways. One way is that sharing may allow you to express emotions that you may have held in otherwise. Think about it! When you try to deal with things on your own, your stress and anxiety levels slowly boil up on the inside. That’s why we may tend to lash out at people unexpectedly. However, when you talk about your feelings, you are practicing a form of self-care. You’re now in charge of when you release those feelings, and, more importantly, to who you release which feelings at any given moment. It also helps you figure out who can provide which type of support as you move through your journey. Because, let’s face it, everyone cannot provide the same level or type of support.

Advocacy through teachable moments for heart failure

Keep in mind that EVERYONE can be taught – even medical professionals. For instance, some heart medications have unintended or less documented side effects than others. If you are experiencing something following your diagnosis that is not normal, do a little research to see if others are experiencing it. You may find some new research that shows it is something unexpected.  Also, talk to your pharmacist as it might be something they are aware of, but your prescribing physician is not. Then, advocate for yourself as you discuss these side effects with your doctors.

Additionally, we can be more creative and create unique teachable moments. For example, for Halloween, you could create tombstones with deaths related to different forms of heart disease and fill red, clear tubes with cut sponges or cotton to represent clogged arteries. You can also serve healthy Halloween snacks and have heart-health activities at your Halloween festivities.

When people know better, they might do better

As you share your story and experiences, you teach others something they did not know. Because you shared your story, your city might make policies that provide more financial assistance or aid to persons with disabilities. A paramedic may invite you to talk at the firehouse about heart pumps because they are uncommon in your area. Your physician may realize a new medication causes sexual dysfunction in women. A community might get a quiet sickness sign that might also help the veteran struggling with PTSD involving loud noises. Your neighbors may learn more about invisible disabilities and even make changes to their lifestyle choices thanks to your efforts to increase awareness. Family and loved ones may be more empathetic to your needs because they have a better understanding.  Advocacy changes both the lives of the advocate and the people around them. Advocacy starts with you!

Are you involved in advocacy for heart failure? This could be being your own advocate, or advocating for others. We'd love to hear about your experiences in the comments below!