Advocating for Your Medical Needs

Posted by Reeve Staff in Daily Dose on September 28, 2017 # Health

Living with a spinal cord injury can come with a host of secondary conditions (such as pain, spasticity, etc.); some of these are very unique to spinal cord injury, having their own set of risks and complications. Some health care workers are familiar with the secondary conditions of spinal cord injury. However, you may also encounter medical professionals who are not as well versed in treating spinal cord injury and missing symptoms can lead to a potentially life-threatening situation. Get ready to arm yourself and your health care professional with the information necessary for optimal health.

In situations where medical professionals are not familiar with some of the symptoms present, the patient needs to inform medical staff of their health needs. The first step in advocating for your medical needs is to be an educated patient. As an informed patient you know your body best in terms of baseline blood pressure and body temperature, how often you conduct bladder management, have changes in bowel routine/management or issues with pain. People living with spinal cord injury may have changes to their health such as a blood pressure that is significantly lower than people without SCI—a “new normal.” Being an informed patient is also being well versed about the secondary conditions you are prone to and having the right tools available to relay that information to your health care team.

The second part of advocating for your medical needs is to educate medical professionals about your condition. The Paralysis Resource Center assists patient and their caregivers by providing helpful and informative wallet cards that patients can carry into medical appointments or emergency rooms visits. The Paralysis Resource Center wallet cards allow patients and caregivers to write important medical information such as Name, Baseline Blood Pressure, Primary Doctor, Phone Number, Allergies, and Emergency Contact directly onto the card itself. These wallet cards address Autonomic Dysreflexia, DVT, and Sepsis. You could also refer health care personnel to the Paralyzed Veterans Association’s (PVA) clinical practice guidelines for treating people with spinal cord injuries.

The third part of advocating for your medical needs is knowledge of your health insurance plan. Knowing the ins and outs of your insurance plan and how your benefits work will help you to navigate the health care system with less chance of unexpected costs or lack of care. (Source: US News and World Report). According to a Kaiser Family Foundation survey, more than 4 out of 10 people don’t understand basic health insurance terms. To learn more about insurance, including Medicaid and Medicare, the Paralysis Resource Center offers a helpful insurance fact sheet. You may also need to learn how to navigate the insurance appeals process.

The US News and World Report website also has a helpful article to review on being your own health advocate. It highlights some important things to consider when it comes to advocating for your medical needs such as; don’t be afraid to ask questions, keep your own records, and know when a second opinion is appropriate.

As with any medical condition it is important to connect with your doctor and keep materials handy in the event of an emergency. The Paralysis Resource Center offers a wide range of materials and publications to assist the paralysis community. Please contact the Paralysis Resource Center and speak with an Information Specialist team member 1-800-539-7309 or post a question via our web form at

Don’t be afraid to connect with others living with spinal cord injury. They can offer a wealth of knowledge. Check out the Reeve Foundation’s peer mentoring program and online community. Blogs and webchats with Dr. Dan and Nurse Linda allow you to pose questions about paralysis to medical experts.

Consider sharing your story so others can benefit from your expertise. “Be an advocate for the people and causes important to you, using the most powerful tool only you have—your personal stories.” ― John Capecci and Timothy Cage

By Jennifer Hatfield. Jenn is an Information Specialist at the Christopher & Dana Reeve Foundation’s Paralysis Resource Center.

The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.