A caregiver's head is a megaphone that their loved one with lupus is speaking through to a large menacing looking doctor.

Advocating For Your Loved Ones

Different people have very different experiences with the healthcare system. Some people are great at navigating the system. They know how and when to ask questions; they may be knowledgeable about how insurances work. Some people may also have more of a science or health care background, making it quite a bit easier for them to ask questions that are relevant and more educated than someone who may not have the “science” to fully articulate how they feel in a manner that the provider will understand.

Working with what you know

My mom has worked in the health care field for essentially her entire career. So, she was well aware of how much of the health care system worked (from an administrative perspective). This proved to be very helpful in many situations. She knew that because she had lupus, she would have a number of specialists that she would have to work with throughout the course of her care. Oftentimes, when you have a lot of different providers involved in your care (and you are leveraging your health insurance coverage) you may require referrals and procedures that may not always seem “necessary.”

My mom knew these sorts of things. But, one of the things that I was able to help my mom with as it related to her care, involved helping to explain the science behind some of the tests or results. Given my background, I was able to understand and convey how certain medications react within the body or with other medications. Sometimes during our conversations, I would help her craft some questions that she could ask for her subsequent appointments.

Tips for advocating for loved ones

As a caregiver, you may sometimes find yourself in a position where you may have to advocate for your loved one. Below are a few things that may help you when advocating for your loved one.

  • Learn to ask questions. If you find yourself in an exam room with your loved one, you should understand that there is always an inadvertent power dynamic that should be established. With the way that the health care industry is designed, the provider and the care team should really be putting the needs of your loved one first. In essence, your loved one is the boss. Therefore, by extension, YOU are the co-boss. You should feel entitled to ask questions when things are not clear.
  • Keep a good record (notes). As a patient or a caregiver, you are absolutely able to request medical records (this is entirely dependent on HIPAA laws). However, I would recommend always keeping a record of things that the providers say during visits. These notes can be helpful in guiding future questions. Speaking of questions, these notes can also be used to keep track of the questions that you (or your loved ones) have asked. This will allow you to keep track of these questions that you have asked as well as the answers to those questions over time. You can keep track of different medications/supplements the providers have recommended.
  • Assist in interpreting. As a caregiver, you may have to act as a bit of a liaison between your loved one and their provider. In this role, you may have to convey the message of your loved one to the provider or from the provider to your loved one. As important as this role is, I think that the most important part of this role is also ensuring that you are not condescending to your loved one, and also accurately articulating any information from the provider.

Understanding the challenges of advocacy

As a caregiver and an advocate for your loved one, you must put the needs of your loved one first! Sometimes you may have to be their mouthpiece when they may not feel empowered to speak. You may have to be their ears when they are in too much pain to listen to their provider. You will always have to be their biggest fan and support. Being an advocate for your loved one can be challenging, but incredibly rewarding. Stay informed and educated on changes in the health care industry as well as advancements in lupus research. This will ensure that you are as effective as you can be as an advocate for your loved ones.

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