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December 30, 2020 | By Jeri Gore

By definition, guilt is like shame. Or pride or embarrassment. It has been described as a self-conscious emotion, one that involves reflection on oneself and sometimes on others.

This is a subject that is difficult for AE Warriors, caregivers and medical personnel on so many levels. As 2020 turns into 2021, I believe this is worth taking a look at, talking about, facing head-on — and putting to rest — in a kind and loving way. Turning over a new leaf, so to speak, as we head into a joyous, healthy and prosperous 2021.

We all feel guilt at some time, especially when speaking of and mulling over the challenges we have encountered while dealing with AE. Specifically, our medical staff, our loved ones, caregivers and ourselves. Guilt is natural. And there is not one of us who is exempt from feeling guilt. But there is no shame in this at all. Rather, facing it will hopefully bring comfort and relief.

Let’s start with medical staff and personnel, for whom AE is difficult to diagnose on an easy day, but far more onerous on the typical patient. I am sure every one of us has a story regarding this, and a few (or more) grumblings to go along with that story. Because of the illness itself, we are a complicated group of patients and easy to misdiagnose at times. As we look forward, maybe we can all “move” forward and begin to forgive those that have had a hand in many of these stories.

Next, caregivers and loved ones. This is tough. Both have gone above and beyond on our behalf. We, AE Warriors, all present in different ways. In difficult ways, in funny ways, in scary ways, in tiring ways and everything in between. While there are trends, there is no standard. Many of the AE variations have typical presentations but still they can, and often do differ for each patient.

There are times when our loved ones and caregivers will feel guilt over what was said or done.  They are Warriors, in a sense, just like us. When on the battlefield, decisions and suggestions can be made in the heat of battle that may not be perfect. We all have learned and will learn from these decisions. AE research is helping greatly with this and if we all work together, inroads will be made to make both treatments and results much better as we go forward. As we look to 2021, I suggest we hold our loved ones and caregivers near and tell them, often, how much we appreciate them in every way possible. They should feel no guilt but as much appreciation as we can give. Our loved ones and caregivers are — more often than not — everything to us.

Finally, what about us? AE Warriors are a hugely varied group, coming from every corner of the planet, with different paths, stories and diagnoses. Yet we are one. Not one of us would ever want to put our family, friends or anyone through what they go through. It is that simple. We are beyond appreciative for each one of them and everything they do for us. I could never begin to adequately express to all those involved in my care what I feel for them. No words can do this for me. My appreciation is beyond the words I write. Sometimes I feel guilt about this. And I am sure most AE Warriors feel this as well.

Then there is survivor’s guilt. This is emotional and hard to talk about. I am here. Some very special and loved people are not. Why is this so? Why are some folk’s symptoms and diagnoses more difficult to bear than others? Often, I feel guilty that I may have had any easier AE path and recovery than others, and I believe we have all felt something of this nature. I am grateful for all I have been given. I hope for a future that includes more research for AE so no one ever feels survivor’s guilt.

It’s my sincerest hope for a future that reveals every AE Warrior, caregiver and loved ones will be one in which we collectively move from Warrior and survivor to Warrior and thriver! As we move thru a holiday season that all of us can celebrate from whatever corner and culture we come from, maybe we can give each other a collective virtual hug, smile and look toward a  positive, happier and healthier time. As 2021 begins, so does more research and help for all of us on every level from diagnosis, to treatment options, rehabilitation, ongoing care and recovery. Here’s to a new year and new beginnings!

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International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE. 

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