When a Chronic Illness Advocate Passes Away
Last week, the chronic illness and rare disease community lost one of our own. She was a bright and beautiful soul who gave her life to advocating and raising awareness for those living with complex conditions.
She was the reason many got diagnosed with Ehlers-Danlos syndrome and related conditions. The informative, uplifting, yet real and raw content she bravely shared touched the lives of many. For myself and many others, she was a friend who brought comfort in a world of chronic illness that not many can empathize with through lived experience.
News like this always comes as a shock, and it is hard to comprehend. Especially for someone so young, and who deserved so much better.
Having to process mixed emotions is valid and normal. There’s no right way to grieve and it’s inevitably a difficult and painful process. It’s an emotion many of us with chronic illnesses have experienced in multiple forms — from grieving the life we lived before we got sick to the futures we lost.
But in moments like this, it’s also a stark reminder of the huge and terrifying implications of living with a serious illness. And also a reminder of why we do the work we do — to advocate and raise awareness of the enormous consequences of such illnesses.
For those of us living with similar conditions, it hits close to home. It’s scary. For both ourselves and for those of us who also have loved ones affected by similar diseases. It reminds us of the importance of appreciating the people we love and living life to the fullest, plus raising awareness for misunderstood and underdiagnosed conditions that are difficult to manage and can have fatal consequences.
If you’re finding the news difficult to deal with just know you aren’t alone. The chronic illness community stands with you. And stronger than ever we will continue to fight for better awareness, earlier diagnosis, more compassion and better healthcare options for those living with chronic illness and rare diseases. All whilst giving each other a shoulder to lean on in our most difficult times.
Take care of yourselves and please reach out for support if you are struggling. We are all here for you.
Written in memory of Amy Lee Fisher, September 7, 1996 – April 1, 2021.
Rest in peace. You will be deeply missed and we are forever grateful for all that you did for our community.
Lead image via @_amieelee on Instagram