From Ivana Golubović, HAE Serbia
2020 has been a challenging year for our HAE community. Delays in the supply of our medicines, limited access to hospital care, etc. However, it also gave me the impression that rare disease patients mentally handled the COVID-19 situation much better than the rest of our otherwise healthy community. Some would say that, due to the nature of our illness, we are more used to being locked inside and that the concept of mortality is somehow closer to us. We surely do meditate on death more often than a regular person. An average HAE patient twice a month.
So, what is our cure for anxiety? Live your life. Even during the pandemic, adjust and make the most of each day. It may seem counterintuitive not to put your plans on hold, but it is important to make plans. Yes – make plans. Remember, the lesser you live your life, the greater anxiety you will suffer, as Yalom put it. Also – prepare. Prepare in whatever way makes you feel prepared for the future, the readiness is all. Last year, on rare disease day, two weeks prior to the lockdown we organized a training in self-administration of our medicines. It helped us fell more ready for what will follow.
And on a final note – the only thing constant is change & this too shall pass!
