How to Be an Effective Advocate for Yourself after Brain Injury
Categories: Living with Brain Injury
Next steps look different for everyone in the days, weeks, months, and years after sustaining a brain injury. Regardless of the path you are navigating as an individual with a brain injury, it can be important to learn how to be an active and effective advocate on your journey.
Learn the basics of brain injury
Every brain injury is unique and impacts the individual in a specific way. From cognitive impairment to reduced mobility to migraine headaches, your symptoms may vary. The implications may be temporary or long-lasting, require everyday coping skills or adaptive technologies. The more knowledge you can gain, the better you can advocate for yourself.
Find the appropriate medical providers
Some individuals with brain injury begin their treatment paths at emergency rooms (ERs), while others may be diagnosed by primary care providers or referred to neurologists or psychologists to confirm a self-diagnosis after symptoms begin to emerge. There is no one doctor, therapist, or rehabilitative counselor that is right for everyone, nor one facility. You may need to see multiple different subspecialties, from physiatrists to occupational therapists to speech-language pathologists, to determine how best to move forward. Certified Brain Injury Specialists receive focused training to work with individuals with brain injury.
Be polite but persistent
If you see a provider who does not understand your symptoms, you will want to seek a second opinion. You can reassess the situation if you find that you are getting consistent feedback from multiple sources.
Know your rights
The Americans with Disabilities Act guarantees legal protections for individuals with disabilities in many arenas of life, including the workplace. Look to legislative action and precedence to determine what you are entitled to based on your impairments so that you receive the accommodations guaranteed to you by law.
Enlist legal assistance
Sometimes it is useful to reach out to a disability attorney. They can help with situations such as establishing fault after sustaining an injury or assist in applying for disability benefits. The Brain Injury Association of America (BIAA) offers a list of Preferred Attorneys who have been vetted for this purpose.
Set boundaries
The “goalposts” of your emotional boundaries may have shifted as a result of your brain injury. Do not hesitate to advocate for your needs, whether they be a desire for reduced social activity, increased kindness, or simply fewer questions about what brain injury means for you long term. Your psychological well-being and emotional health are important priorities.
Seek help
State-specific organizations are an excellent place to start advocating for yourself. Brain injury associations in various states offer referrals to resources, medical providers, and attorneys that specialize in many of the services above.
Sustaining a brain injury can be a life-changing event. Effective health care advocacy is a way to empower yourself as you navigate this journey.