Why I Choose To Be a Patient Advocate
Last updated: October 2023
Sometimes I ask myself, "Why am I doing this? Why did I commit to being a patient advocate for a whole community of people struggling with thyroid eye disease?"
We all go through different highs and lows in life but this disease put me below the lows! Sometimes pictures pop up in my memories on Facebook of me; attempting to smile with family and friends. They all look happy, while my mouth is smiling, yet my eyes are in a horrified, bulging stare. It is triggering.
Reasons I am a TED patient advocate
Being there for community members
I would rather just keep moving forward and stifle the past. But then I think of how lonely and confusing my journey was as I searched for reasons why my body seemed to be attacking me, my eyes, my face! I remember when I finally got a diagnosis of thyroid eye disease (TED)... NOBODY had ever heard of it. There was nobody in my circle of family and friends who even vaguely knew about TED. To make it more confusing, the doctor I was seeing at the time was not very forthcoming. Google became my constant companion but what I was reading only scared me. This dark journey and my search for answers and treatments emboldened me. I fought for myself. But it does not have to be like this for patients with TED. That is my NUMBER ONE reason I have chosen to be a patient advocate.
Thyroideyedisease.net is an amazing community that I know would have met me where I was in my darkest days with TED, and in my best days of recovery. Now I choose to meet you, my community members, where you are. I paved my own way and I know how hard that is when you are sick with this disease and in your most vulnerable state of mind.
As a patient advocate, I have written articles that I hope will embrace what you, as community members, need to hear or understand as you try to grasp what this disease is doing to you. In my articles I have shared my early symptoms of TED and my 2 year search for a diagnosis. Following articles have been about my active phase of TED and another one finally about my inactive phase. Then there are articles I talk about what I had to give up in my daily life such as driving when my double vision was at its worst. Maybe the most difficult article to write was how TED affected my mental health, yet I vowed to share honestly. I will continue to share how this unmerciful disease messed with my life and how I got it back. My hope is that you know you are not alone and what you are feeling is real.
Helping and being helped: Continued healing
My second reason for continuing to be a patient advocate in our community is because I learn so much from you as members. When you have tried a remedy or behavior that eases your symptoms, you share with all of us. Everyone's heart is in the right place and we all want to feel better. You also, so impactfully, detail what your current symptoms are and I can relate. You can take me right back to the depths of thyroid eye disease and by doing so you remind me of how far I have come. At these times, with maybe a tinge of a trigger, I know how thankful I am to my doctors and this community for my continued healing.
Understand that I am not completely altruistic about my role as a patient advocate. There are periods of time when I have to take a break. TED is a tough disease and sometimes I choose not to think about it. The memories, and struggles, and worries, and darkness, can sit on a shelf for awhile until I am in the right mindset to delve into my TED past again.
Let's continue to connect!
As a community, I hope I can continue to connect with you and address your struggles and questions. I know I have not been able to address all of your concerns in my articles so please reach out and let me know what they are. Would you like to know more about teaching family and friends about your disease? How to explain it to your young or adult children? How to meet the demands of family while living with TED? The emotional impact of living with TED? ... I know the list is long. I am open to new ideas to meet you where you are in this journey.
What in your life has TED impacted? (Select all that apply)