Believe it or not, I am someone who has a disability. Not all people with disabilities look, feel, or struggle the same. However, I can guarantee most of those with a disabilities struggle with financial assistance, medical care and supplies, and feeling validated in medical settings. I have recently been diagnosed with a disability and this is how my experience inspired me to help others with disabilities.
My name is Cortney, and I began experiencing seizures after receiving the first Pfizer COVID-19 vaccine. I was hesitant to take the vaccine in the beginning because of my medical history, but my job at the time required it. During the pandemic we were sent home for 16 months and there were talks of reentry but requiring all employees to be vaccinated. I am allergic to a few medications and antibiotics so my main concern was my body sensitivity to a drug that was only recently created. The following day after receiving the vaccine I was hospitalized for a seizure. Unfortunately since that day, I have had seizures every month triggered by stress, anxiety, inadequate sleep, or poor eating habits.
If someone has two or more seizures they are considered to have epilepsy. Any person who has epilepsy can’t drive for 6 months after experiencing their last seizure. As a mental health therapist, my job can be extremely stressful which sometimes triggers a seizure. After experiencing a seizure I feel like my brain has been placed in a washing machine. I have a migraine, I am extremely fatigued, and I experience confusion and slurred words. I have had tons of injuries such as chipped teeth, bloodied noses, and I bite my lips and tongue. Once when I was home alone and I experienced a seizure, I knocked my three front teeth loose having to get a retainer to keep my teeth in place. Because of the injuries I have experienced being alone, I have become very anxious of being home alone fearing no one will be there to assist me. After a seizure it takes me about two days to recover but about a week to get back got normal. This has greatly impacted my finances because I have to cancel appointments last minute, I have to cut my case load down, and I am unable to accept new clients. I have the greatest fear of being home alone because I don’t have any medical supplies that will alert my husband or mom I am having a seizure which can be random and unexpected. I think the saddest part of my experience is the lack of validation, support, and resources I have gotten from doctors I have seen. When I struggled finding help and assistance for myself I was shocked and disappointed because I have a masters degree in social work. Imagine the men and women who have a disability and cannot read or write trying to find services, financial assistance, or even resources for the help they need.
My experience has been the driving force inspiring me to advocate for those with a disability. I have reached out to local government expressing my concern and ways we can sit down and discuss how to improve this current system to no avail. My email is either being passed around to different departments or ignored. I am born and raised in Florida, and unfortunately out of 50/51 states, depending on who you ask, my state is number 48 in the funding allocated to disability services. There is a 10-12 month waiting list for social security benefits and typically individuals get denied twice before being approved the third time. Thats if you are persistent enough to continue after being denied multiple times. There are a few programs that “offer” financial assistance however, not every disability is covered and there is a waiting list to the many that are. The two programs that assisted me were Josh Provides and Epilepsy Alliance. However, I had to to find them myself by researching financial assistance for those struggling with epilepsy. It upsets me to think of individuals who are struggling but do not know how to research and find assistance for themselves. As a masters level social worker myself only finding two agencies highlights the disparity in services for the disabled. I believe if more money was allocated to agencies they can increase funding to help those struggling with a disability until they are approved for disability or get on their feet. This will provide them with funding to receive medical treatment. There were times I had to decide to pay our rent or go to the doctor. The financial stress and strain only triggered more seizures. Funding allocated to disability services can also increase the number of agencies around to service the community as well as increase marketing so the individual does not have to search for themselves. It would have been a great service and benefit for me to learn about the different services for those with epilepsy at my neurologist appointment.
As were on the subject of my neurologist appointments let’s discuss the importance of cultural competency and hiring more people of color, more people who are bilingual, and more people who struggle with disabilities. I was often referred to doctors who did not know much about my culture and made a lot of assumptions. The worst assumption Ive gotten was that I was insubordinate and angry. I had multiple doctors tell me I would die if I do not take the medication. I was prescribed medication in the hospital for epilepsy. Although the only indication of me having a seizure was from my coworkers who witnessed it and made the 911 call. All my tests came back normal and did not indicate any backfiring in my brain which is a clear indication of an epileptic seizure. The medication I was prescribed was less than 40% effective, it increased anxiety, depression, and suicidal ideations. You could also still have seizures on it and if you stopped taking them or miss a dose it will trigger a seizure. You can imagine someone with a previous history of anxiety which has significantly increased after experiencing seizures would not want to take a medicine that would worsen my mental health. However, when I explained that to multiple healthcare providers I was reprimanded and told I would die. I often left the doctor and burst into tears feeling defeated, invalidated, and scared to die. That increases my fears for those who can’t articulate their concerns with their doctors so they don’t take their meds or miss doses. I often asked doctors for other solutions and alternative medications or vitamins which were ignored until I found a Functional Medicine doctor. My functional medicine doctor listened to all of my concerns and ran numerous tests to get down to the bottom of my issues without putting a band-aid of medication. I also had great luck finding a new neurologist who actually cared about my problems and not just prescribing medication. The most important characteristic in a doctor for me is someone with empathy, knowledge of their field, and a passion for helping their patients. I don’t want to be another number to a doctor and unfortunately, I have had those experiences where I felt like I was a number. That is why it is so important for me to fight for diversity and inclusion when it comes to jobs and careers but it all starts with colleges and universities admitting more people of color in their programs. I just read an article of an Asian student who was rejected from 6 elite schools even though his SAT score was 1590 and his GPA was 4.65. Imagine how many black and latino students are also discriminated against and turned away. Black students account for only 8% admission in Ivy League schools and a startling 7% acceptance to medical school. With only 5% of doctors identifying as black and only 3% identifying as hispanic. Representation is important especially to serve the 27% of US citizens who struggle with a disability.
My life changed significantly after experiencing seizures and although I have struggled financially, I am blessed to have support and access to resources. Not everyone is as lucky as me and does not have access to resources, help, or even someone to advocate and speak up for them. This experience has opened my eyes to the inequities people with disabilities faces, especially people of color. I will continue to use my voice to advocate and fight for their rights as well as mine.
Websites and Links
https://www.jacksonville.com/story/opinion/editorials/2016/09/15/florida-stingy-aid-people-disabilities/15724430007/