It’s been a while since I last blogged. At some point I figured that I had run out of things to say and considered giving up blogging forever. Yet for some reason I paid my hosting fees for another year, just to give myself the option of blogging if I felt the need to. I haven’t felt the need to until the last month or so, but I haven’t had much access to my computer due to my kids taking over for home school.
Trying to stay alive in a Covid-19 world when you’re disabled and immuno-compromised
What to say about what life is like in a world with Covid-19 when you’re disabled and immuno-compromised? It’s awful and soul-crushing. Especially because so many healthy people have comforted themselves about the situation saying “well only sick people will die, so it’s not really a big deal.” As one of those sick people it’s pretty horrifying to hear that my life is considered expendable and not a big deal. I want to tell those people that I can hear them, and now I know how the really feel about me.
The other terrifying thing is that health care resources are being rationed, thanks to the incompetence of the US Federal government, people who won’t social distance, and our for-profit medical care system. Health care workers have to set priorities, and many have announced that people with disabilities are at the end of the chain. I’ve been in several groups for people with chronic illness who have discussed not telling health care workers their history so they aren’t put at the end of the list. I would not recommend this approach, but I understand why people are discussing it.
I’m also terrified because the people around me are not taking quarantine seriously. Many are using this time to get with friends and family and enjoy themselves, which endangers the rest of us. In my state people don’t like anyone telling them what to do, so many are ignoring the advice (not requirement) to stay home. People with compromised immune systems are pleading for others to take this seriously, but often it falls on deaf ears.
Living with chronic illness had prepared us for quarantine
Still, it feels like I’ve been practicing for this quarantine for a very long time, just like many others with chronic illness and disabilities. So many of us are used to being stuck at home and having the internet be our only outlet to the outside world. We’re used to staying within the walls of our home and seeing nothing else. We’re used to Facebook groups being our only social outlet. Healthy people should take this time to listen to us and our experience about how to survive and thrive.
I personally had to teach myself to become introverted so I could survive the lack of social interaction. I had to learn how to be okay without being busy, without seeing people constantly, and without external validation. It’s been a rough road, but I have learned to be okay with silence. If some had been more understanding about my illness this might have not been necessary, but such is life. Now I think I’m handling this better than many others because I’ve taught myself how to be okay.
As I watch many healthy people freak out about life in quarantine, I admit that I try not to laugh. I also want to waive my arms in the air and yell” “this is how we have to live our lives, do you see us now”? I keep waiting for them to realize the experience those with chronic illness have ,and then turn to us for advice. So far I haven’t really noticed that happening. People with chronic illness continue to be an untapped resource.
This is the time for healthy people to be more understanding towards people with chronic illness
Now that healthy people have had some experience being stuck at home and feeling helpless, it’s time for them to stop saying “I wish I could stay home all day and not have to go to work.” Now they know that staying home all day and not going anywhere is not all fun and games. That’s why they keep ignoring the quarantine orders after all. Once this quarantine ends the hope is that healthy people remember their experience and become more understanding of those with chronic illness in the future.