At the beginning of this year, no-one could have imagined how our lives would be turned upside down in 2020 with the COVID-19 crisis.
Everyone around the world has been affected in many ways, and some very dramatically. In March, we thought it would be over in a few months, but now it seems difficult to foresee when it will all end.
Much of our life has moved online and has become a “virtual” life. Will it ever become “normal” again? Doubtless in the years to come psychologists will be writing shelves of books about how people and society were affected by this devastating virus. Hopefully, however, the lockdown will have opened many people’s eyes to the social isolation experienced every day of every year by many people with chronic diseases, including many patients with IC/BPS (interstitial cystitis/bladder pain syndrome).
Let us also hope that this experience will lead to more empathy and understanding for people who have difficulty leaving their home every day, not just in the COVID-19 crisis. In the medical world and patient advocacy, meetings, and conferences this year have moved online.
For us as patients, even our hospital appointments are currently online or by phone, a change that is likely to remain to a certain extent even after COVID. Will this be enough for the chronically ill? Will more professional counsellors and more helplines be needed?
On the positive side, we are becoming more experienced at online meetings and have been able to take advantage of the many educational webinar opportunities organised by societies or individuals, with many more to come this year, as you can see from the list of events in this Newsletter, including a Masterclass by ESSIC covering a number of webinars this autumn.
We need much more of this virtual information and education for patients, their support groups and patient advocates. It is an ideal way to educate and train IC/BPS patient advocates to play a full and valuable role, nationally and internationally, including in research projects.
Although IC/BPS research has experienced some disruptions during the past difficult months, publications in our field have continued, as you can see from the Research Update in this Newsletter which will hopefully bring you up to date.