Advice from Quarantine Veterans
March 20, 2020
As members of the rare disease community, we are often tasked with asking others to donate their time, resources, or expertise. Chances are, if you’re a rare patient or caregiver, you’ve learned to advocate for your health, spearhead drug development efforts, and cultivate more health and medical knowledge than most non healthcare professionals will in their lifetime. In taking ownership of this narrative, we have now become the experts people will want to turn to in this new world of social distancing and disinfection paranoia.
“We’ve got this isolation thing down. We may have some tips on staying busy and staying sane.”– Cordelia Wylde-Larue
For those with rare autoimmune diseases, cold and flu season is already a time to be cautious. One LAM patient jokes, “I stockpile hand sanitizer when there’s no pandemic,” perpetually wary of subways, airports, and ubers. Someone who is immunocompromised could be in any one of these places, operating through a lens of caution and arming themselves against door knobs and handrails. Masks, gloves, hand sanitizer, and social distancing are all safeguards and practices that are a daily and lifelong reality for many rare disease patients. Since the outbreak of COVID-19, Sarah was surprised and frustrated to find that her regular CVS run for these items had suddenly become complicated.
One rare mom sympathizes with first-time homeschool parents whose children have been sent home from school due to COVID-19 prevention measures. Many parents are now being forced to work as homeschool teachers while completing a regular work week from home. Elisabeth advises “do as you do, plus social distancing,” offering virtual piano lessons, yoga, coloring books, and online brain games as respite from the chaos. Additionally, creating a daily schedule can provide some much needed structure while stumbling through uncharted territory. Despite having learned some valuable lessons as a repeat quarantined caregiver, Elisabeth emphasizes the importance of “extra grace. For yourself and the people you live with.”
“Every day I’ve lived fearful of germs, infections, and viruses. These are things that have always attacked my body. As an immunosuppressed patient with respiratory disease, I’m taking action to prevent COVID-19.”– Caleigh Haber
As someone who has imposed a self-quarantine due to medical necessity before, rare disease patient Cordelia offers advice on “tips for staying busy and staying sane.” Once you’ve binged watched all your favorite shows and cleaned out every room in the house, it’s time to start getting creative with those solo hobbies. Cordelia emphasizes the importance of variance and having a wide range of activities to occupy your time in your back pocket. Being in the middle of two books and having recently taken up embroidery, she marvels at the wonders of youtube when it comes to trying new things, noting that “the ability to laugh will get you very far. Try things even if you think you will fail miserably at them.”
Many people in the rare disease community are offering insight and encouragement in the wake of confusion and unprecedented global health precautions. While we are certainly receiving attention for being one of the more at risk groups, our voices and insights have also become amplified and empowered as we continue to come forward as experts at a time where the general population is inexperienced. To contribute to this conversation, you can share your story, tips and tricks for dealing with quarantine and social isolation, and raise awareness for the needs and vulnerabilities of the rare diseases community by emailing [email protected] There are many ways we can still come together, while staying physically apart.
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