Being immuno-compromised in a Covid-19 world is terrifying.
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.
Lovely to see another post from you and I really, really hope you don’t call it a day on your blog any time soon. I always enjoy what you read and you will always have something to say, even when your brain is too mushy that you don’t feel like you do.
I feel your concerns. I’m also in the ‘extremely vulnerable’ group due to autoimmune disease, lung scarring and bronchiectasis. It’s worrying. And it’s bloody annoying when others don’t take distancing seriously and come up close to you. It’s like driving. You can be a great driver but all it takes it one other idiot on the road and it won’t matter how good you are at being careful. As for feeling expendable and being angry at the way the governments have responded… I don’t think I can go there right now. I have been so, so angry lately. I’m not an angry person but it’s really upset me as I think of all those very poorly, those that have already lost their lives.
At the moment I’m still having to go shopping because there are just no home grocery delivery slots at all. It all just feels very impossible, so I think a lot of us will be holding our breaths until this is over and hoping for the best before more people die. It’s hard to even imagine how or when this will end, isn’t it?
You must have a lot on your plate now with kids at home but I hope you can find the time for yourself to relax and distract your brain when you can. I’m always around if ever you want to chat too. Hang in there and please try to stay as safe as possible. xxxxx
I totally understand why you can’t go there right now, it’s all so overwhelming. Thank you for your lovely comment!
Thank you for this. I completely agree with the exception of the health care system remarks. My daughter lives in a first world country with national healthcare which, of course, was heavily rationed prior to the virus. She pays for an extremely expensive private health insurance in order to have anything remotely resembling the minimum standards of American health care (such as routine physicals and blood work or any type of preventative care…you only go to the doctor if you are sick). There are few, if any, provisions being made for people with compromised immune systems such as home grocery delivery and safe labs. She can do some computer medical appointments but must still sit and wait in the DMV-like lab for blood tests for her rheumy. My best friend lives in another first world country where the hospitals look like something out of the 1960’s Soviet Union. When the ER is full (after regular business hours because doctors work in the day time) patients wait in ambulances in the driveway for hours, sometimes dying because there is no triage done until entry into the hospital. Our system is certainly not perfect but is leaps and bounds ahead of what is available other places.
I’m not really in to mood to discuss the politics of healthcare, but I will say this: When you have a system of “healthcare” based on profit, poor people are always going to lose. It’s always been true, but this pandemic has made it clear. It’s not a comfort to me that rich people and the few who have good health insurance in this country have better care than other countries. Poor people deserve to live too.
Sorry, I have enjoyed your blog very much and found it helpful. I didn’t realize we were discussing politics….which seem to have invaded everything, including a universal pandemic crisis. I was merely pointing out my personal experience with various health care delivery systems. Apparently you are under the impression that life should be “fair” and that everyone should only have the best of everything. I’m 70 years old, disabled and in constant pain from an auto immune disease, and I can tell you that life is not fair and never has been and, to be honest, never will be. Some people will always have more or better than others. I believe that, as Americans, we should appreciate the many benefits we have as opposed to other countries which have other systems that are not as effective. Have a great life and good luck in the future.
By the way, my “rich” daughter is the unemployable (due to ankylosing spondilitis) wife of a fabulously wealthy teacher in a Catholic primary school. They choose to pay for private health insurance because she would be dead without it.
Unfortunately healthcare in America is politics, which it shouldn’t be. I have excellent health care, I’m very lucky. I believe that everyone else deserves excellent healthcare no matter who they are and how much money they have. The fact that people die from being poor in this country is something I will never be grateful for. Life is never fair, but that doesn’t stop me from trying to make it more so.
It’s nice to see you posting, but I so wish it wasn’t because we’re in the midst of this pandemic. I have so many emotions going on right now – anger, sadness, anxiety, fear and it’s hard to find positivity. That’s not like me but I imagine most of us feel the same.
Our government here isn’t handling this well either. We supposedly have a lockdown here, but people are still out socialising. How hard is it to understand how serious this is? They complain about being stuck at home for a few weeks. How would they ever cope with chronic illness when they can’t get out?