Fighting the Madness: Autoimmune Depression
Autoimmune Encephalitis can be a devastating, life-altering diagnosis not only for patients themselves, but for their spouses, children, caregivers, and families. While there are many forms of AE, all AE patients have one thing in common; their own bodies have turned on them. Patients experience a host of symptoms, ranging from psychosis to autonomic dysfunction. The symptoms sometimes come on suddenly in the middle of the day, without warning; while others suffer silently for months. AE impacts people of all ages, gender, and race. There is no discrimination when your body is silently waging war on your once healthy brain. Like war, it’s very unlikely for a person with AE to walk away unaffected. Every single part of your life is impacted in some way. Most report loss of personality characteristics, careers, mobility, memory, cognitive function, spouses, family members, and friends. Patients spend weeks, months, and even years in hospitals or long term rehabilitation centers learning to function normally again. Treatments for AE can be harsh on the body; as many receive chemotherapy, steroids, and IVIG at rapid rates to help stop the body’s attack. Or be subjected to plasmapharesis where the body’s blood is filtered through a machine and the offending antibodies are removed. AE drains your energy, and sometimes your spirit.
Sometimes life with AE feels impossible, especially when you are surrounded by people who don’t believe your disease is real, or that you “can’t possibly be sick, you look fine!” No one could possibly understand the great amount of energy it takes for AE patients to get out of bed in the morning, put on a smile, and fake it through the day. It may be true that most AE patients don’t look “sick” in the way we expect, and because of this I feel there is pressure for them to try and be as “normal” as possible. This constant pressure, lack of support or validation for how they are feeling, combined with the physical and emotional symptoms of this disease, leaves most suffering in silence with a host of emotional issues, such as depression, anxiety, PTSD, etc.
In the next few months, I will taking a look at different mental health issues as they pertain to Autoimmune Encephalitis. These posts are designed to provide support, and resources for AE patients and caregivers who may be one of the ones suffering in silence. I say suffer no more, because you are not alone!