SARAH, 43, Oakland, California
Sarah is a librarian by day and a patient advocate by night. She is 43 years old and works as the director of the digital library in Oakland. She has been diagnosed with Ehlers-Danlos syndrome fifteen years ago, and additionally lives with many other conditions, including an immunocompromising mold toxicity and mast cell activation.
Sarah has recorded herself speaking about her coping strategies related to COVID-19 and what she wishes other people would understand.
COVID-19 Video Transcript
Due to being immunocompromised from my mold toxicity and mast cell activation syndrome, I have been self-isolating since before it was standard practice. For the last several months, I have been homebound. So, I had a head start on others in getting used to being at home all the time. I was already adjusted to the isolation before the stress with the global pandemic hit. But being immunocompromised, I am extremely nervous about contracting coronavirus.
Coping with COVID
I have been sharing ideas about being isolated, working from home, and keeping relationships going during the pandemic. I have been using Twitter and Facebook and have shared 30-something tips so far. And that gives me purpose too. I feel grateful every time someone says ‘Thank you’ for something I have written, or they say that what I wrote was something they really needed to hear that day. Being a librarian, my inclination is to help others with information. And sharing what I’ve learned – sometimes the hard way – makes me feel like I am helping.
I wish non-disabled people would understand that they are connected to many people – whether they know it or not – who are disabled. None of us asked for a crappy immune system. None of us did something to ‘deserve’ our disability. And nevertheless, we are more at risk and, therefore, a lot more nervous. I just ask that people try to understand that when we are sanitizing everything, don’t allow visitors and wear masks, even not during a pandemic, we are protecting ourselves from very real medical threats, not imaginary specters. The best thing all of us can do is to be kind and to spread awareness of how we can collaborate to protect each other during this very difficult time.