The Importance of Self Advocacy, Asking Others, and Finding Advocates When You Don’t Know Where to Go

By Eliza Marie Somers

Speaking up and advocating for yourself can be a difficult prospect for many individuals, and this is especially problematic for many brain injury survivors who don’t have the capacity to undertake such a daunting task.

After a brain injury, many survivors are dealing with their new normal: fatigue, brain fog, headaches, confusion and memory issues, along with numerous doctor appointments and therapy sessions. It’s like being swept up in a wave of information without a paddle to navigate your wants and needs to successfully heal.

During the Brain Injury Hope Foundation’s July 14, 2023, Survivor Series: The Importance of Self Advocacy, Asking Others, and Finding Advocates When You Don’t Know Where to Go panelists revealed effective strategies to become better advocates and when to ask for help.

But sometimes advocating for yourself can mean pausing friendships and family ties. After her brain injury in 2017, panelist Jena Taylor was single and living alone, and had to press pause on her relationship with her mother.

“My immediate family didn’t step up. This was a bone of contention for me,” Taylor explained. “My neurologist said, ‘Stress is the worst thing, and it’s going to be an enemy in your recovery. If people are in your way, you need to remove them.’”

“I had to remove my mother from my life after a couple of warnings.” Jena told her, “If you’re not going to be part of the solution and be a part of the problem, I can’t have you being a part of my life. At that moment, I ceased a relationship with my mother for many years. Fortunately, I had a village of friends, and they came in and took over. They made sure I had healthy meals.

“I’ve heard in many of these meetings where people talk about having people in their life and they are not helping. Sometimes being an advocate for yourself means you have to walk away from relationships. To walk away from my mother took a lot of courage, but I was advocating for myself, and it had to happen.”

After a few years Taylor and her mom have reconciled and have a stronger bond and relationship. “It was a good learning lesson, and we appreciate each other, ” Taylor said.

Asking for Help

One of the hardest things a person can do is ask for help. Societal norms suggest it’s a sign of weakness, but in reality, asking for help can be empowering. Stanford University research suggests people want to help more than we realize https://news.stanford.edu/2022/09/08/asking-help-hard-people-want-help-realize/.

“It was tough at first,” said panelist Jeffrey Therrien of asking for help. “I would just listen to doctors, and I couldn’t understand… I began asking the doctor for notes. I had to be humble to ask for that information.”

Therrien said during the first years of his recovery he “needed to get out of my own way. There was this mystery in the mirror, and it was hard for me to accept help.”

“There’s a lot of shame and guilt with (asking for help),” he continued. “You feel like you are co-dependent. There was a lot of self-disgust asking for help.”

Benefits of Self-Advocacy

• You get what you want and need.
• Empowerment/Increases self-esteem.
• Involved in your own process and have a say in your situation.
• Make your own decisions.
• Self-respect.
• Understand how to help yourself.
• Resourceful/Research.
• Sets appropriate boundaries.

Therrien said he started to look at times when he helped others in the past and that is how he “made peace” with asking for help.

Brain Injury Hope Foundation president Gayann Brandenburg has spent her entire career working in a supportive role helping people with disabilities find employment, housing, health care and behavioral support. A few years ago, she was diagnosed with mild cognitive impairment after chemotherapy and a bout of COVID-19.

“My whole career has been about supporting others with disabilities,” she said. “The biggest piece was admitting I can’t do every thing for myself and asking for help. And disclosing to my employer that I needed accommodations.”

• For more on disclosing a medical issue see the March 9, 2018, Survivor Series. https://www.braininjuryhopefoundation.org/when-and-how-to-disclose-your-tbi/

BIHF vice-president Joanne Cohen explained that after her brain injury she was taking jobs that did not fit her new life.

“It’s not about finding a job; it’s about finding the job that fits,” she said. “I went from manager to senior manager to director. I was taking jobs that were too big for my brain.”

She said she “got smarter” and found jobs in which she could excel.

“You have to find the right job, the right environment and the right supervisor,” Brandenburg added.

Medical Advocacy

Cohen sustained a freak accident while on vacation and fell down a flight of stairs, breaking her wrist and suffering a brain bleed. However, at the hospital her friend could not be at her side due to COVID-19 restrictions, so Cohen had to advocate for herself.

Cohen suspected she had a brain bleed, but was told by numerous medical professionals she did not have any symptoms of a brain bleed. Cohen had to insist on an MRI and X-ray of her head to quell her suspicions. “I had to advocate for myself,” she said.

After tests confirmed a brain bleed, Cohen, who kept her cellphone with her during the emergency room visit, called her brother to advocate for her.

“The doctor came back and said, ‘I don’t have good news for you. You have a brain bleed, and if you don’t get better, you will have brain surgery tomorrow.’ Luckily, I had my phone with me to call my brother to talk to the doctor,” Cohen said.

Cohen, who “doesn’t like to take no for an answer,” also said survivors need to advocate for themselves when a doctor or therapist is not a good fit for them and their needs.

“Sometimes you have to go for your second or third options for a therapist or doctor,” Cohen said. “Do some research. You don’t have to be loyal to a physical therapist. You have to be loyal to you.”

Taylor said she had to advocate for cognitive therapy after her accident.

“When I was starting to regain the ability to walk and making (physical) progress, what I noticed was cognitively things weren’t connecting upstairs. The word I wanted wasn’t there. I’m a professional writer and I own a marketing company. This is a catastrophic loss for me as a communicator,” Taylor explained.

“I went to my neurologist and told her what was happening. Something’s not right. I can’t connect. And she put me in speech therapy. I didn’t understand speech therapy meant cognitive therapy. And that was a huge, huge catapult in my recovery. The neuroplasticity kicked into action but until I said something, they didn’t volunteer this type of therapy for me.”

Taylor also mentioned mindset as a key asset to her recovery.

“I’m optimistic, Pollyanna-ish so I had that going for me after the injury,” she explained. “After a brain injury, we are altered; things are not right. I had some really dark days where I would write off the day and go to bed, and the next day I would have less pain in the head. The next dark day I would do the same thing.”

Taylor said being positive and optimistic really helped her in her recovery.

“Some people have a victim mentality,” Jena said. “Look at Nick Vujicic, who was born without any arms or legs. Nick has a wife and family, and is a global motivational speaker and advocate for fulfillment, and if someone like that can find a full life, so can I or any of us with disabilities despite our level of disability.”

For more on Nick Vujicic

• https://www.youtube.com/watch?v=tJnJ_fTYofQ
• https://www.youtube.com/watch?v=hVy3p72aTCg
• https://www.youtube.com/watch?v=FdkuALA62hA

Advocating with the Energy Pie

Not only do brain injury survivors need to advocate for medical care, they sometimes must stand up for their needs with their family and friends, and that is where the energy pie comes in to play.

“We have to take ownership of our own recovery, embracing the new normal, a new life and really owning it,” Cohen said. “The energy pie changed my life.

“Lots of time we can become complacent,” she explained. “I can remember feeling discounted, and the energy pie helped explain to people what I was going through—that it takes most of the pie to just live our lives.

“People don’t mean to discount you, and this helps to explain the changes you are dealing with after a TBI.”

The energy pie also can help mTBI survivors understand their fatigue and ways to minimize the exhaustion by taking breaks and allowing more time to do things.

“I was always tired,” Therrien said. “I was blasting through those reserves. The energy pie helped me to understand why I was so tired. Now I knew why.”

Assets of an Advocator and Where to Find One

When BI survivors are at their most vulnerable and unable to effectively  communicate, finding a trusted advocate can be a necessary component in understanding your rights and conveying your desires and needs to family, friends and medical personnel.

“There’s a natural talent to advocate for people,” Cohen said. “Not everyone has the talent to be an advocate. You have to make sure your co-partner keeps YOUR interests in mind and not theirs. They need to be a trusted adviser.”

Some traits of a good advocate include:

• Listens to you.
• Co-partners and involves/includes you.
• Is not afraid to “take a stand.”
• Has the person’s interest in mind vs. their own self-interest.
• Has the Will AND the Skill to be an advocate.
• Is a “trusted adviser.”
• Understands when someone does not want an advocate AND when someone NEEDS an advocate.
• Communication, collaboration, presentation skills and professionalism.
• Non-judgmental.
• Problem-solver.
• Honest and a person of integrity.
• Supports and empowers individuals to make their own decisions.
• Encourages self-advocacy.
• Has a “can do” attitude and doesn’t give up.
• Straight-forward.
• Educates themselves.
• Knows the questions to ask you and/or your medical team, etc.
• Takes notes.
• Compassionate and caring.
• Loyal to you.

Therrien said it might take several attempts in finding an advocate who is a good fit for you.

“I had to knock on a lot of doors to find them; 20 to 30 people before a connection was formed,” Jeff said.

So where do you find an advocate who you can trust and has your interests in mind?

Brandenburg explained every state has agencies that can advocate for you as the programs are federally funded. And help can include filling out Social Security Disability Insurance forms, assisting in finding employment, and helping with life skills.

Gayann gave an example of a survivor who lived alone and could not figure out how to open her cabinets, and a center of independent living assisted the survivor in relearning basic skills again.

Brandenburg said if you are not getting the help you need, keep calling the agency until you find someone that will help you with your needs. And it is important to know what your needs are at that moment to help the agency find the right support.

“Be persistent,” Gayann said. “Call back and talk to another person.”

• To find your U.S. Congress representatives https://www.congress.gov/members/find-your-member
• How to find state representatives https://www.usa.gov/state-local-governments

“Advocates also can be found with your state and federal representatives, and within your social circle, such as church or Bible study,” Brandenburg said. So do not be afraid to ask a friend for help.

While self-advocacy can be a bit daunting, it can bring added support and can empower the brain injury survivor to continue their healing journey.

“Empowerment is any step taken forward,” Taylor said. “It gives us hope. It gives us courage. It gives us nutritional value to our soul.”