(read her mother’s story about being a caregiver to a family member with a tbi here .)
sydney marconi: it would have been beneficial to have a peer support worker/advocate or to be a part of a peer support group. i would’ve liked having people around me that could understand and relate to my situation. this is especially true since i sustained my brain injury as a teenager and i felt quite out of place and alienated from the rest of my peers.
advertisement
sydney marconi: my life was definitely set on a different trajectory following my brain injury. i began having issues surrounding concentration, anger, aggression, impulse control, memory, low self-esteem, self-worth and efficacy, cognitive fatigue, depression, anxiety, overstimulation, indecisiveness, brain zaps/sharp pains, overwhelm, aphasia, sleep issues, etc. since this time, i still have many persisting issues that make it difficult for me to maintain steady employment, relationships, and complete general day-to-day activities (ex: self-care, getting groceries, keeping up with housework, etc.)
sydney marconi: when i first began working with health care professionals, they would always ask me, “what brings you in today?” these kinds of open-ended questions caused me so much anxiety and i never knew how to respond (didn’t they know why i was there?). i would end up responding with “i don’t know” because i didn’t really know what services the professional was offering. this made me feel incompetent and they would often write this in their report as a symptom of my brain injury. i felt judged and misunderstood.
advertisement
many of the assessments and treatments i was given weren’t strength-based, but focused heavily on what was wrong and giving me bleak prognoses, which decreased my motivation to follow through with appointments. for example, i was told i would likely not graduate high school with my peers, let alone attend university (which i
did). i was also told i would likely engage in risky sexual behaviours and activities, be impulsive, defiant, and have trouble maintaining a job. no one ever explained to me the reasoning for this though, and it made me question who i was as a person. was this the only thing that people saw when they looked at me?
sydney marconi: the policies, procedures and processes were, overall, quite complicated. my mom had to jump through many hoops to get me the services i required. my mother applied, on my behalf, for the disability tax credit three times. i was rejected each time. it took her reaching out to mps, social media, et cetera, for them to review my application and approve it. and it was only through research that we even knew about this benefit. i really owe a lot to my mother for taking the lead and advocating for me.
advertisement
sydney marconi: it’s difficult to come up with a one-size-fits-all solution, as everyone is different. but i think there needs to be more awareness, understanding, and knowledge available to the public surrounding brain injuries. empathy, compassion, active listening, and validation can go a long way when trying to recover. it is not a linear process and it’s important not to dwell on “setbacks.”
sydney marconi: allow clients to go at their own pace, have more patience and understanding, listen and believe what your clients tell you is their truth, advocate for them while including them in the process (build confidence and self-efficacy), have more available information on what to do and look out for following a brain injury (for clients and caretakers), and don’t force or manipulate clients to participate in treatments they are clearly not interested in.
advertisement