COVID-19 forced millions of people worldwide to stay at home. Governments imposed measures such as physical distancing, stay-at-home, and total lockdown to contain the disease as it spread from China to the rest of the world.
While these steps aimed to keep people safe from the virus, the isolation has also caused mental and emotional effects on everyone. No one knows exactly what lies ahead so people tend to panic which adds to the stress they experience.
Important information about COVID-19 came out slowly compared to how fast it is transmitted. Health experts find out more information only as events unfold. As the World Health Organization cautions in one of its videos, “what is known about the virus can change.”
But if the general population finds the uncertainty difficult to bear, it is even worse for rare disease patients. What the WHO tells us is that while everyone can get the disease, there are two groups who are more at risk of severe symptoms and complications. These are:
- people aged 60 and above, and
- people with pre-existing medical conditions
This does not give enough insight as to how rare disease patients fare when it comes to COVID-19.
In the middle of all the uncertainty and stress from the pandemic, Ben’s Friends reached out to members and encouraged them to reconnect with their community so that they can both find and provide support to others. As the Ben’s Friends team told everyone, “When nobody else gets it, together we do.”
And this is exactly what happened. Members found friends to talk to virtually and process what they had to deal with because of COVID-19.
In the PsA community, for example, Jen75 asked her fellow members about the social connection strategies they are doing during the pandemic. To jump start the conversation, she shared the apps that she uses to communicate with her mom and friends.
Sybil then shared that they’re using the ever-reliable good old telephone.
For Poo_theraphy, it’s What’sApp and Facebook for the family while a Facebook page has been very useful for the residents in their village.
The thread allowed both members and moderators to express their fears and worries about the pandemic. TJ127 took the lead by sharing how he worries about the health of his family. He himself belongs to the high-risk population according to his doctor. His wife and two daughters, on the other hand, work in the healthcare sector and their parents are already in their 80s.
DickD then followed. Similarly, the pandemic has been worrisome for him. His parents and in-laws are all senior citizens. He and his wife both have AVM and the thought of popping off adds to his worries especially for their son who would be left on his own.
Aside from PsA and AVM, the other communities also served as a venue for members to talk about COVID-19. In the Ataxia community, Scamom shared her frustration about being denied a neuro appointment because, in the past few months, she had some symptoms similar to COVID-19 although she hasn’t been tested for the disease yet.
In the Chiari community, Dragonfly shared about an upcoming surgery and the worries that go with it because of the pandemic. Should there be any complications, there might be limited medical support available because of the strain on the healthcare system caused by COVID-19. It would also be difficult to ask help from friends because of the lockdown.
The situation we have right now sure has taken its toll on everyone whether they get the disease or not. Mental and emotional repercussions result from fear, uncertainty, and sudden disruptions on people’s way of life. Having access to support groups is of prime importance. Ben’s Friends is grateful that our communities are able to provide its members a space to cope with the pandemic alongside people who understand their condition the most.