I have been living in some form of social distancing for more than 600 days. Since receiving a non-related donor bone marrow transplant for my rare blood disease in July of 2018, I’ve been immune compromised enough that going out in public or being around other people is dangerous and as a result often live in isolation. This type of isolation isn’t uncommon for those of us with rare diseases for a number of reasons ranging from dealing with unpredictable symptoms, difficulties with medication, and the non-accessible public spaces. For many of us this is our everyday reality, and, unlike those being isolated because of COVID-19, we will remain living this way for long after the novel coronavirus has come and gone.
I’ve often found that the most challenging part of adjusting to living in isolation is finding a new sense of meaning in our everyday lives. Throughout my disease progression and bone marrow transplant, I often felt like the world was dealing me a long series of losses that left me struggling to find meaning and enjoyment in my new reality. I could no longer depend on things like my job, school, or even being with my friends to give my days purpose. Many of the things that I relied on to give me a sense of identity didn’t matter much when I was stuck inside. Suddenly, I had to find other things to fill my time and re-frame my priorities.
This isn’t an easy shift to make. It requires a little bit of sadness and recognition of grief to get you through, and that’s okay. A loss is still a loss, and it can take a while before we’re ready to accept such extreme changes to our daily lives. Isolation makes us feel distant from the people we love and the places we cherish. Mourning those losses is a natural and healthy thing to do. Simply put, being sad is a part of the adjustment and it can often help us find value in things around us that we never would have paid attention to before.