Mental health and Dysautonomia
My Story
By, Corri DeFazio
“If you feel like you aren’t being listened to… find someone that will go out of their way to research your symptoms until they can come to a conclusion that will help you make accommodations in your life. That is your right as a patient!”
Dysautonomia is accompanied by any number of debilitating physical symptoms, but we rarely discuss the emotional and psychological connection to suffering from an invisible illness. Mental health plays a crucial role in the intricate world of Dysautonomia. Oftentimes, emotional pain can be even worse than physical pain. Going through mental exhaustion causes my physical symptoms to worsen. Specifically, my headaches, nausea, and fatigue increase. My anxiety also triggers tremors in my hands and leg muscles, so writing can be strenuous. Loss of fine motor control is a symptom of mine that particularly bothers me during the school day, because I struggle to write sentences or sign my name on documents. I remember going home and crying after getting my learner’s permit at the DMV because I could barely sign my name. I also struggle with cognitive function due to severe brain fog and fatigue. This is hard on me because I have always been considered “gifted” in school. I feel my identity being stripped away from me because I am losing parts of who I’ve always been due to something I cannot control. I’ve always been someone that strives to go above and beyond in everything. Not being able to reach my academic goals has caused me to grieve and has affected my self-esteem.
Grief is an emotion we all are very familiar with, but for people diagnosed with Dysautonomia, it is not always in the traditional sense. Instead, we experience grief more often and in different ways. Losing opportunities and other aspects of your life is a heavy loss. The five stages of grief are denial, anger, bargaining, depression, and acceptance. Since I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), I have gone through countless cycles of these stages. People with Dysautonomia grieve the paths that are no longer an option in our lives. I grieve the person I was before I became ill, and I grieve the future that I once planned on.
Denial is the first stage of grief. I didn’t want to believe that my life could change so drastically, especially because I never had to spend any time in the hospital or under intense care. Then the anger began to hit me. I was angry that the universe burdened me with this condition, and I was angry that none of my peers could relate to what I was going through. I experienced a lot of jealousy that other people my age were able to experience a joyful and productive life, while I struggled to get daily tasks done, like washing my face. Fear of missing out is a very common experience shared by those with autonomic dysfunction. Most people feel left out when they can’t make it to a party or gathering. For those of us with autonomic dysfunction, we feel betrayed when our bodies refuse to let us get out of bed.
The third stage of grief is bargaining. It is most recognizable as a deep sense of helplessness. I feel helpless when my teachers and authoritative figures invalidate my struggles. I also feel helpless when my symptomatic days never seem to end. Bargaining is soon accompanied by the fourth stage, depression. I’ve struggled with anxiety and depression throughout my life, a lot of which was connected to my undiagnosed chronic illness and not having any answers. I don’t know if being diagnosed has made my depression better or worse. On one hand, I can now have closure because I have a name for what I’m going through, and I’ve made connections with people that are experiencing similar situations and illnesses. On the other hand, I’m fearful of what the next day may bring, and I spend a lot of time worrying about my future.
The final stage of grief is acceptance. It’s taken me a long time, but I believe I’ve finally reached this state. This is when you start to be able to advocate for yourself in your daily life and make lifestyle accommodations. It’s not that I’ve given up, but rather I have found a way to forge new pathways in my life and be flexible with my options and goals. I have accepted the hand dealt to me and am finding ways to make the most of living with this disorder.
Anyone suffering from Dysautonomia can relate to feeling unheard. Invisible illness is one of the hardest things to go through. One of the main reasons people with autonomic nervous system dysfunction go undiagnosed for so long is that most of our symptoms are not visible to the naked eye. They can be written off as severe anxiety or even irritable bowel syndrome for those whose primary symptoms are nausea related. For me, I was lucky enough to be diagnosed by a female doctor who also suffers from Postural Orthostatic Tachycardia Syndrome. I was able to open up to her and we came to a diagnosis in under an hour and I immediately felt a sense of relief. It is vital that patients with invisible illness feel heard by their medical team. If you feel like you aren’t being listened to, I recommend switching doctors until you find someone that will go out of their way to research your symptoms until they can come to a conclusion that will help you make accommodations in your life. That is your right as a patient!
There are multiple forms of POTS, but I suffer from Hyperadrenergic POTS. This means that my body releases an abnormal amount of adrenaline during the day. It can happen for any number of reasons, one of which being standing or walking for a long period of time. I have an increased heart rate and abnormal blood pressure when my legs are at a lower elevation than my torso, so I’ve had to adjust how I sit during the school day. Being that my body is in a state of constant fight or flight reaction, I suffer from symptoms of anxiety at all times. I have been diagnosed with anxiety since I was eleven, and I frequently wonder if my anxiety derives from my illness.
Hyperadrenergic POTS also means that fainting is rare for us. Most people with POTS faint multiple times per week, and some even reach full syncope more than once a day. In my case, I have only fainted a few times which were due to physical exhaustion and overheating. Frequent dizziness and fainting are not experiences I would wish upon anyone, but sometimes I wish that I could faint like others with my illness so those around me could see an external manifestation of how I feel internally. I struggle with the fact that I experience presyncope every single day and that my hyperadrenergic POTS makes my invisible illness that much more invisible. However, I am grateful that I don’t have to deal with fainting in public because I know that it’s a terrifying and mortifying experience.
I hope that anyone else who is dealing with the psychological effects of living with an invisible illness can read this story and know that he or she is not alone. I strongly recommend getting involved in the Dysautonomia community on social media or in online support groups! Making connections with fellow Potsies has helped me to feel liberated from my invisible struggles that suffocate me daily. Living with chronic illness is the closest thing to moving through life in slow motion. I hope this story can encourage you to live every moment to the fullest, even the painful ones, because feeling pain is better than feeling nothing at all. You don’t get to experience the good days if you don’t make it through the bad ones. Mental and physical healing is not linear, and it’s important to remember that recovery comes in waves. I hope anyone who is dealing with the grief that comes with Dysautonomia can benefit from reading this story. I’m proud of myself because at the end of the day, I will never apologize for making my illness my “whole personality.” I have gone through years of physical and emotional torture, and my illness has become a key part of my identity. In a weird way, I’m grateful for POTS because it has shaped the person I am today. Thank you, Ella, for welcoming me for the second time to share a part of my health journey with Dysunderstood. I’m extremely grateful for all the love and support I’ve gained from my previous story. Thank you to everyone in the Dysunderstood community who read my story and reached out to me! Keep up with my health journey by following me on Instagram @dancingwithdysautonomia.
Click here to read Corri’s first story on Dysunderstood.
Thank you to our primary sponsor, Vitassium by Salt Stick.
Audio Accessibility Feature brought to you by Nurse Mates®.