When people think of epilepsy, they think of seizures. The goal of doctors is to get the seizures to stop with the treatment of medication. What is not taken into consideration is the emotional and mental effects having seizures has on an individual.
Many individuals with epilepsy have experienced negative or traumatic experiences. Sustaining injury from seizures, toxic relationships due to the stress of epilepsy, negative experiences with medical professionals, all these things add up over time. The result can be an individual developing Post Traumatic Stress Disorder (PTSD).
In America, we still label mental illness with a stigma rather than provide the resources to help people deal with stress and mental conditions. The result of it is many Americans will not seek treatment due to fear of being labeled as crazy, lack of insurance coverage, or cannot afford the co-pay costs. More needs to be done to address the issues of mental illness, especially for individuals who are battling epilepsy and PTSD.
According to the Mayo Clinic, Post Traumatic Stress Disorder is defined as a mental health condition that is triggered by a terrifying event—either experiencing it or witnessing it (Mayo Clinic, 2020). Flashbacks, nightmares, escalated reactions, avoidance of places/situations, are all common symptoms of post traumatic stress disorder.
While treatments such as psychotherapy, cognitive therapy, and medication are available, it can take months or years before someone feels the symptoms of post traumatic stress disorder. What is more challenging, there can be many situations that are traumatic that can lead to what is known as complex post traumatic disorder.
I, myself, am battling complex post traumatic disorder. My epilepsy and PTSD goes back to a traumatic childhood from dealing with having grand mal seizures (aka tonic-clonic) as well as a poor family dynamic due to the stress of epilepsy. When I was a teenager, my neurologist at the time instructed my mother to give me Tylenol and Sudafed if I felt like I was going to have a seizure. It almost killed me three times. I found out years later from another neurologist that my former neurologist was conducting a study and received a grant for it, making me a subject in the study without asking my parents permission to do so. It was the ultimate betrayal and the beginning of me distrusting doctors.
As much as I felt betrayed by that neurologist, I want to state that I have seen neurologists who have treated me with compassion and respect. Not all doctors act in an unethical manner. The doctor who helped me become seizure free listened to my frustrations and went up and beyond to help me find the resources needed to overcome what I was dealing with. I found out I had PTSD due to a former neurologist hiding medical results from me. Before there were patient portals for us to see our records, many remember the nurse putting your chart out in the file container for the doctor to grab before going in to see you. I had a feeling this doctor was hiding something from me, and I grabbed the chart and took it in the room once the nurse left. I read through his notes angrily as I saw how much he had hid from me, how he was trying to pressure me to go on disability even though he knew what was going on. It was easier to not only keep me sick, but the economic gain was more beneficial than to help me get better. When he came in the room and asked me what I was doing, I told him off for hiding important results from me. After leaving that doctor and going to the neurologist who helped me to get my seizures under control, he expressed his disgust that the doctor hid the information from me and promised to make things right. I can say he kept his promise and even though he has not been my doctor for years due to me relocating to another part of the country, I still have a high level of respect for him and appreciate everything he did for me.
I have had more negative experiences with nurses, from being physically assaulted to being sexually assaulted. I am in therapy now due to the sexual assault. I began having night terrors seven years after the assault took place. Due to the mistrust that was established over the years, I am afraid to seek help from the doctor. Currently, I am receiving psychotherapy through a non-profit that helps survivors of rape and sexual assault. I will be honest, it only does so much. Even through I am getting better at trusting people and finding peace within myself, I still cannot shake the anger that I have at that nurse. What I find is worse, now that it has happened, I get upset and uncomfortable around nurses very easily which is not fair to the many nurses who do their jobs and truly care for their patients. I know the only way to overcome it is to take responsibility for it. I hope in time that I can have more trust for nurses and feel more comfortable in a hospital environment. That is one of my goals I am currently working on in therapy.
The reason I share these experiences is the fact that I want people to see the effects epilepsy and PTSD has on patients and the doctors who work with them are facing complex cases. There is no magic pill to resolve the situation, there is no magic wand they can wave. It takes a lot of patience on both ends to be able to come to a solution. Our healthcare system needs to start showing more support in providing mental health care along with increasing funding for mental well-being. By providing more support, we can help to reduce chronic long-term illnesses later in life, reduce the suicide rate, and provide a better lifestyle for many Americans. If people with epilepsy and PTSD can get better access to these resources, it can reduce stress and help to decrease seizure activity. It can give them a better opportunity to have a more positive, productive life and give them the opportunity to contribute rather than feeling isolated from society.
If you are battling epilepsy and PTSD, make sure you find a doctor who will help you to focus on not just your physical well-being, but your emotional and mental well-being as well. Epilepsy and the complexities that come along with it create many challenges for those battling epilepsy. Advocate for yourself, set goals to improve your well-being, and make sure to establish a strong support system. Do what you can for yourself and others as we work together to defeat epilepsy.
Mayo Clinic (2020). Post-Traumatic Stress Disorder (PTSD). Mayo Clinic. Retrieved from: https://www.mayoclinic.org/diseases-conditions/post-traumatic-stress-disorder/symptoms-causes/syc-20355967