In Partnership with CSL Behring
Self-advocacy is a key component to navigating life in the world of medicine. The healthcare system, while a vital resource, is just that: a system. It is designed to be effective and efficient, providing assistance to those who need it. However, in doing this, it can sometimes lose sight of recipient-oriented care.
While doctors know science and research, only the recipient knows what it is like to live in his or her body, and, ultimately, the recipient is the one who has the most invested interest in the care being given. If your body was a company, you could consider yourself the CEO.
How to Become Your Best Advocate
The foundation of self-advocacy is understanding your condition. Doing your own research is an important part of this. Doctors are a valuable resource since they have conducted a lot of research about a specific topic, but there is room for the recipient to step into the position of being the expert on their own case. Even in the same disease area, there can be a variety in presentation and symptomatology. Your own lived experience, and learning from the lived experiences of others, can be a very useful tool. This can be something as simple as reading medical journals to find articles that relate to your specific diagnosis or set of symptoms. Knowledge is power and the more you know, the more prepared you will feel when it comes time for the doctor’s appointment or hospital visit.
In addition to doing your own research and discussing with your physician, it’s also important to ask valuable questions. Knowing the risks and benefits of each viable treatment, anticipated outcomes, alternative diagnoses for symptom presentation etc. is very important to making informed decisions. Ask questions, and keep asking until you feel as though you’ve gotten an answer.
You can request all concerns, tests refused and treatments tried to be documented in your chart if your team consists of more than one provider or if you are interested in seeking a second opinion. Having your own copy of all relevant medical records is also a good idea. This saves you the time and energy of having to explain it and leaves a tangible trail to reference in determining future diagnoses, tests and treatment.
Finding Support in Self-Advocacy
If you are struggling to voice your feelings and concerns, it can be helpful to bring someone with you to help you advocate or to help absorb information. FaceTime or speakerphone calls can be a way to involve a care partner if one cannot physically attend the appointment with you. It can also be helpful to write down key questions or concerns you wish to have addressed beforehand and bring them with you.
It helps to know that it is within your right as a recipient to get a second opinion or to request a different provider if you feel your concerns are not being addressed. In certain situations, and with certain types of health insurance, a self-referral is able to be made by directly contacting physician’s office as opposed to coordinating communication between multiple care providers. This can be a valuable resource to recipients who feel their needs are not being met.
The key to surviving and thriving as a recipient within the medical system is to be your best advocate. Knowing you are in charge of your own body and care plan can prevent many unwanted headaches. Keeping detailed documentation, doing your own research and voicing your opinion can be the difference between feeling like a victim and feeling empowered.
