Living Rare in the Time of COVID-19

Thu, 04/23/2020 – 13:29

By Tasia Rechisky

On March 11, I was at a meeting when one of my co-workers made the comment “Well, it’s likely we all won’t be here together soon.” At the time, the comment did not fully register, but over the next few days, the reality of the situation became clearer.

On March 13, an email was circulated to confirm that “until further notice,” all employees would be working from home. It then came time to make the decision if I should stay in the urban area where I live or go stay with family in a rural area. I am so grateful for having options, which I know is a luxury not everyone is afforded. I decided the safest option, as someone at high risk due to a rare disease, was to leave my home – not knowing when I would return.

I went about my life, trying to keep my focus on the day-to-day: my job, my classes, and reconnecting with friends and family. However, quickly, my parents, who have always worked multiple jobs and owned a business simultaneously had to shut their business’s doors and were furloughed, leaving me the only person left in the household working. Then, a report came out listing the top ten at severe risk if they were to contract COVID-19. Metabolic disorders, which is the broad category my disorder, Very Long Chain Acyl Coa Dehydrogenase Deficiency (VLCADD) falls within, was on it. I watched as my patient community started to panic, feeds flooded with “Only the vulnerable will be at risk. Your ‘only’ is my everything.” Then, my trip to Pittsburgh for the medical trial I am on, which was close to approval, got canceled. And as many have experienced during this crisis: the fear hit hard.

We all cope with fear and traumatic events differently. Some let the fear seep in at a slower rate over an extended period of time, while others push it back until they can’t anymore. I am definitely one who does the latter. I do find my anxiety rising thinking about the implications of restrictions begin to loosen and life tries to return to “normal.”

My life has always involved several of the aspects of our new normal during COVID-19, like taking extra precautions and missing out on social events and milestones to preserve my health. 

Here are some crucial lessons that I can share about living through a time of illness:

  • Take it one day at a time. Make a plan. Share your concerns, needs, and thoughts, but do not live in the world of “what ifs.” Trust in the fact that you are equipped to deal with any hardship that may come and live in the knowledge that today you did everything you could.
  • Don’t think about what you can’t do, but what you CAN. I know for myself I feel particularly disheartened by the fact that I cannot be out on the front lines. I feel guilty that I have put that burden on others without being able to share it. When I start to have these feelings, I find ways to help even with my limitations, and think about ways I will be able to lend my skills in the future as new needs arise.
  • Lean on your community. There are so many out there willing to listen and converse with you about your fears. Personally, I have turned to organizations like Our Odyssey, Rare New England, and Mitoaction to connect. It is an opportunity to leverage our collective experience and wisdom to get through this together.
  • Express yourself. For me, it is writing. I have been journaling every day as an outlet for my conflicted thought. It will be something I can look back on as a positive learning experience.

And most importantly, keep going. Because the world needs you and brighter days will come.

Tasia is a longtime rare disease patient and advocate. She was born with a rare metabolic, Very Long Chain Acyl Coa Dehydrogenase Deficiency (VLCADD). She is a rare disease speaker for Genetic Metabolic Center for Education and a committee member of Rare New England (RNE), which brings together New England patients, families and providers touched by rare and complex disorders. She has spoken at several universities and conferences on the impact of living with a rare disease, works with pharmaceutical companies to improve resources for patients and their families and speaks on behalf of rare disease legislation. She is a creative writer and is also a contributor to Mighty on rare and chronic illness. She currently lives in Malden, MA and works in research & development. In her free time, you can find her traveling, exploring the outdoors, reading, and volunteering in the community.


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