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Navigating COVID-19 - we need your help.

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This is a scary time, to say the least. We know all of you are doing your best to stay as healthy as possible, but there are so many factors out of our control. As we are all trying to figure out how to navigate this pandemic, particularly when we live with dysautonomia, we have found ourselves asking “What can we do to help?”

At DINET, we think our best course of action is to keep investing into our network as much as we can. This is a time when our virtual community is more of a strength than ever. Remember that…


·       It is okay to be scared or unsure. Our forum is a safe space to communicate with other people who live with dysautonomia and who have close loved ones with dysautonomia. In times of social distancing, this forum is an important tool to connect with people who may have similar thoughts, experiences, and fears regarding COVID-19.

·       One of our medical advisors has released suggestions about how to navigate dysautonomia and COVID-19 as best as possible. http://www.dysautonomiaclinic.com/1250-2/

·       We are strong, and stronger together. While this is an unprecedented time, many of us have dealt with times of isolation due to our health conditions and symptoms. We have also dealt with the stress that can inevitably arise from health issues that are poorly understood, and have unclear outcomes. While we have never dealt with a pandemic like this, we hope that we can use our experiences to support each other and share coping strategies through this time.


That being said, we were NOT given a choice to live with dysautonomia. It is unfair that we have had to face isolation and health anxiety for many years in a world that is not always understanding. It is also unfair that we may be more at risk of COVID-19 than other people who do not have underlying health conditions.

However, over the years, we have also watched you all exchange countless pieces of wisdom, humility, vulnerability, and practical tips to cope with dysautonomia and all that it brings. We are continually humbled by the resilience in this community. While it is okay to not have it all figured out (none of us do!), we know that you are a strong group of individuals who have a lot of experience to share. So, in this time, we are calling on all of you to help others who may not have the same level of experience in coping with scary and poorly understood health issues, such as dysautonomia and COVID-19…

We would like to put together a tip sheet for everyone (both people with dysautonomia and without) about how to cope with social distancing and anxiety around unknown health issues, such as COVID-19. We want this tip sheet to come from the collective knowledge of our community. So, please share any tips you have by answering the following two questions in the comments…


1.       What tips or strategies do you have for coping with social isolation/distancing?

2.       What tips or strategies do you have for coping with the stress that can arise from dealing with poorly understood health issues, such as dysautonomia and COVID-19?

THANK YOU! These are scary times, and we will continue to be a network where we all try to navigate them together. We will take each day as it comes, and we are sending wishes for you all to stay as well as possible.  

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My strategy for social distancing is to stay in touch via social media like facetime or skype, or by phone, with my friends and family. 

My strategies for coping with the stress of coping with poorly understood health issues is RESEARCH and sharing experiences with others. 

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  • 3 months later...

My tips or strategies for social distancing--along with what Pistol already stated-- 1) use this time to invest in an activity that is enriching and comforting.  Although I have been in a very bad flare up for 2 months of this pandemic which meant I couldn't do much anyway, when I am feeling the energy to do so, I am investing time in additional violin practice and research and listening to music that I would not have had time for otherwise.  I think developing a new hobby or interest that can be explored on your own is great too.  2) comfort cooking or baking has been a guilty pleasure (moreso back in March and April when I was feeling better).  Cookies, bread, etc that make the house smell comforting and "normal" felt good to me.  3) getting outside.  I think fresh air and sunshine is important for health.  Even when I was feeling poorly, I was going outside if the weather at all allowed, at least onto my porch.  I noticed I felt at least 10% better just being outdoors and enjoying observing the street trees and the plants I am growing on my porch and in my yard.  Simply observing  birds,  ants and other insects, made me feel more connected to the world and distracted from the worries of feeling unwell/the pandemic.  It's my wish that every person has access to some beautiful ourdoor location--which sadly is not the case for everyone and especially now.  But as parks are re-opening, visiting a park is one of the safest activities you can do away from home and I think it is hugely beneficial for mental and physical health.

My strategy for coping is research and supporting others going through similar experiences (as Pistol states too).  I've also found some meditations on line for dealing with anxiety and chronic pain that help.  This is an on-going process for me!

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  • 6 months later...
  • 3 weeks later...
On 1/12/2021 at 1:52 PM, Healthixir said:

Follow all health protocols, proper hygiene. stay home as much as possible, and stay away from social media as they tend to cause further (unnecessary) anxiety. 

Anxiety causes us to not think rationally, so yeah, stay away from social media.

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