March 18 is Brain Injury Awareness Day. To honor TBI survivors and their daily struggle to find a ‘new normal,’ we’ve created this Guest Post with Huffington Post writer and TBI survivor Amy Zellmer. If you’ve experienced a TBI, here are four things you need to know right now, and four ways to find support.
One: It’s normal to feel angry, afraid or stressed out.
A TBI can spark a range of confusing emotions, from anxiety and apprehension to anger, helplessness and panic. Zellmer confirmed that after her TBI, she constantly felt afraid of sustaining a second injury and daunted at the prospect of managing her TBI symptoms for the rest of her life.
Some TBI sufferers encounter “a daily struggle even trying to get out of bed in the morning,” said Zellmer. “They are terrified of what might happen to them next. Some have such profound anxiety that they can hardly leave their home.” Zellmer cautioned that attitude shifts after a TBI can be severe. “My personality has changed,” she said, “and I am aware of my mood swings…sometimes the bad days are just more than I can handle.”
Find Support: Zellmer notes that the fear, anxiety and helplessness that you feel can be successfully managed and treated. Sticking to a routine, staying involved in the activities you enjoy, and accepting that your feelings are normal are helpful first steps.
For additional support, there is no shame in seeking professional help. “Seeing a therapist on a regular basis has really helped me deal with my PTSD issues and fear of hurting myself,” said Zellmer. “A therapist is not there to judge you or tell you you’re right or wrong. They are there to help you sort through your emotions and anxiety to relieve yourself of the negatives in your life.”
Two: Cognitive issues can catch you off guard.
There are multiple cognitive symptoms that might affect your daily life after a TBI. For Zellmer, cognitive issues following her TBI were both frustrating and disruptive. “We [as TBI survivors] have cognitive deficiencies that don’t make sense, even to us,” Zellmer noted. “The confused woman in the kitchen staring at the oven is someone I am just now starting to understand,” she said. “I am finally coming to terms with this ‘new me.’”
Find Support: According to Zellmer, the cognitive issues associated with your “invisible” injury can make you feel isolated, judged or misunderstood. “After my TBI, I felt isolated and alone,” said Zellmer. “No one really seemed to understand what I was going through, or possibly, they didn’t believe it was as severe as it was. When injuries and illnesses are invisible like TBI, it’s easy for others to say, ‘well, you look normal, so you must be okay.’”
Zellmer responded to this isolation with action: “I created a group on Facebook for survivors to hang out and feel like they fit in. Many were craving this sort of connection and community.”
Speaking with like-minded TBI survivors may significantly improve your mood and outlook. The connections may even help your brain to physically heal. “For me, personally,” said Zellmer, “once I began to understand that my symptoms were normal and fit the scale of what others were dealing with, it really started to help my healing and the grieving process as I let go of the ‘old me.’”
Three: Every TBI is different.
For some, a TBI comes with constant physical pain and overwhelming fatigue. For others, the injury is synonymous with constant confusion and debilitating memory impairment. Your TBI is as unique as you are, and your symptoms may be a one-of-a-kind blend of physical or mental challenges. Ultimately you are the only expert on your unique circumstances and struggles following a TBI.
Find Support: For Zellmer, finding an outlet for her emotions and thoughts was an important step in the recovery process. At first, said Zellmer, “I didn’t have the courage. I [was] scared…scared that people will be snarky or rude….scared of reliving the fall.” Zellmer realized that releasing her emotions would allow her to support other TBI survivors and conquer her own fears about her experiences. “Writing is your therapy, Amy,” she said to herself to combat the doubts.
“Finding your ‘new normal’ is an important part of recovery and healing,” said Zellmer. “Get out and get active or find a hobby.” Not all hobbies will bring you as much satisfaction as frustration: “Many of us can’t deal with computer screens or loud stimulation, so finding a new alternative can be challenging, but rewarding when you find it,” Zellmer said.
Four: TBIs are expensive to rehabilitate.
The average lifetime cost for a TBI averages $85,000 but expenses for a severe TBI can top $3 million. The recovery process may call for therapy, physical rehabilitation, extensive medical testing, medication, transportation to specialization centers and regular GP or hospital visits. Some costs, including temporary housing and transportation, may not be completely covered by all insurance plans.
Find Support: HelpHOPELive supports TBI patients in their recovery process by providing assistance with fundraising both online and in your community. If you are struggling with the costs associated with your TBI, learn about your options at m.helphopelive.org/supportforinjury.
Zellmer noted the importance of finding professionals who will give you the support and insight you need to recover. “Find a doctor who understands and ‘gets’ you and your TBI,” she recommended. “If you’re not happy with the one you’ve got, look for another, or ask for a referral from someone in your area.” Finding the right recovery team for you may be an ongoing process. “Be an advocate for your health!” Zellmer urged.
You don’t have to face your TBI alone.
Though every TBI is unique, you don’t have to struggle with the symptoms of your TBI without support. Zellmer releases regular blog posts on The Huffington Post for TBI survivors.
“Know that you are not alone,” said Zellmer. “There are approximately 53 million people in the U.S. living with a brain injury. There are many groups out there trying to help raise awareness. Get involved! Join support groups. Get active. Embrace your new life!”