Self-advocacy is learning about and deciding what is best for you, mentally and physically, and then taking steps to get the right support and tools into place. It can take time and courage to do, but it is well worth the effort.
This article provides guidance to help you become your own advocate, to prepare yourself for a successful future after a major medical event such as a stroke, traumatic brain injury (TBI), or other diagnosis.
Often after a life-changing medical event, such as a stroke or TBI, you may need accommodations to address new challenges that may accompany your diagnosis. It may not feel easy at first to ask for these accommodations. The key is to determine what challenges you are facing, what accommodations or modifications might help you through those challenges, and to then communicate these needs to those around you, including your family and friends. For example, you may find yourself unable to walk or maintain balance as you did before. You may consider accommodations, such as using a walker, or attending physical therapy to help you adapt. This is self-advocacy.
Self-advocacy varies from person to person. For some people, self-advocacy may need to focus on less physically obvious challenges. Aphasia, for example, is a communication disorder that may occur after a stroke or traumatic brain injury. It affects a person’s ability to communicate verbally and understand speech, and can also hinder reading and/or writing abilities. Many people with Aphasia may not be able to verbally speak out. Nevertheless, their concerns deserved to be recognized. There are accommodations that can be put in place to help, such as using non-verbal communication, like using picture boards or other augmentative and alternative communication (AAC) devices to communicate. Self-advocacy should be individualized to a specific person’s individual needs.
First, think about what self-advocacy means to you. Self-advocacy can look different for every person, but it directly ties into self-esteem and confidence. Believing that you can adapt to or overcome a challenge encourages you to work towards improvement. The more confident you feel about yourself, the more likely you are to advocate for yourself. It could be comfortably talking to your clinician or doctor about something you want to be changed in your treatment plan or just asking what your treatment plan is. The health care system may feel confusing, so it’s important to ask your doctor or clinician questions to avoid stress and allow you to focus on your recovery journey.
You might ask questions like these:
Sometimes it can be helpful to write down this list before you go into your appointment to make sure that you don’t forget in the moment.
In any setting, you should feel in control of your life. After your diagnosis or medical event, you’ll find yourself in a brand new situation, where you or your family may be unsure of how to move forward. Even if you have a full list of questions, don’t be afraid to ask all of them! The medical professionals you work with are there to ease your nerves and are trained to answer patient questions at any step of your journey.
Your rehabilitation process is necessary for recovery, although you probably will feel overwhelmed throughout your recovery journey. Self-advocacy can help by empowering you to make a difference in your own life. Ask your healthcare providers any questions you may have. Whether it be your speech pathologist, occupational therapist, or physical therapist – the professionals treating you can answer questions like:
As you prepare to be discharged from in-patient care, you should also ask about warning signs that something is wrong, when you should return to the hospital if needed. If you were in an in-patient setting, you may also want to double-check all your medications, and make sure you know what to expect when you get home. What changes will be made to help you navigate through daily tasks? What services can you access either at home or on an outpatient basis? Will you need non-verbal tools, like a communication device to help you communicate? Or will you need to adjust your home to make it accessible for your mobility needs?
Rehabilitation can be very stressful, but you should remember that you are important and deserve to advocate for yourself. If you find yourself thinking, “Can I really do this?” think about all the other things you have accomplished and the improvements that will come of this. Be your own motivational coach, and try to think, “what would I say to a friend struggling with self-doubt?” Also, don’t let yourself be consumed by this life-changing event – take time away from therapy and research to do the things that bring you enjoyment.
Remember, you have a group of professionals cheering you on. Your doctors, nurses, and therapists are all helping you work towards improvement. You may have your family or community as a support system to help you through this. Supporting and believing in yourself is the key to getting your life back on your own terms.
Nisha Kassam is an intern at Constant Therapy Health and studies Speech Pathology at Boston University, specializing in Deaf Studies and Spanish. Her experience focuses on understanding disabilities and healthcare, creating a passion for learning more about and improving healthcare disparities.