Life After Quarantine

Life After Quarantine

Eventually, life will return to normal for millions of people who’ve been ordered to stay at home. But for the thousands of us with chronic illness, life will remain the same and there’s disconcerting feeling that I’m going to be told “I understand,” about how it is to live in isolation from people who are not only healthy, but people who’ve only been in isolation for a few weeks to a few months. And the thing is, my chronic illness and my isolation, don’t come with an expiration date. I don’t get the all clear eventually. It’s terminal.

Liza Zoellick

Don’t get me wrong, I’m not an insensitive human being. I know what y’all are going through. I went through it when I first found myself at home and no longer working. I think I must have churned out an 800 word post every day. I had a lot to say and I was bored out of my gourd. I was used to going to work and doing something with my time and work becomes a huge part of your identity. It makes you feel useful and like you are contributing to your family and when it is taken away, you feel useless. However, now, you have millions of people home from work, who although they are working from home, are not accustomed to working from home, have partners who are working from home, have children home and are probably not able to get a lot done. (I’m not.) Everything is out of sync and there’s no routine. Being at home is more like a twisted, working vacation, where you are glued to the news and social media, caught between watching this catastrophe unfold while laughing inappropriately at the memes, and unable to focus on your work.

Meanwhile, the chronically ill have been at this since day one, navigating these rough waters. We’ve learned the ins and outs of what works and what doesn’t, all while being sick and in pain; all while struggling with anxiety, and various forms of mental illness (for some of us), and all while struggling with the notion that our illness will never get better, will never go away and will likely get worse (for some of us). It is a daily battle. It is a mental battle for all of us, even if there is no mental illness, because you are struggling with physical illness and struggling with the inability to be like everyone else, to go where you want to go, to have a job like everyone else; you may or may not be able to be very dependent. I cannot drive because of seizures and I am dependent on other people to drive which makes me crazy most days. Like any adult, you have days when you want to be able to just go out and drive, be on your own, go to the store or get coffee or just listen to the radio and think. But you also have days when you would rather stay in bed and not move, and the idea that someone could even come to me and say, “I understand your situation” makes me cringe. Because, they don’t. Not nearly enough and I wouldn’t want them to.

I get it though. This is rough for everyone, and there’s a sense of comradery that wasn’t there before. But there weren’t a lot of writings about the loneliness of chronic illness 10-15 years ago. There weren’t a lot of insights into feeling trapped or bored or what to do about it. It was the lack of these things that inspired many of the first chronic illness bloggers, to begin chronicling their lives and experiences and hacks. By their sharing it with us we no longer felt lonely in our small words and with the advent of social media, our worlds became much, much bigger. We could find people out there just like us, going through the same things, experiencing the same feelings, and we could share our world with them. Social media became a lifeline for many of us and is now, more than ever, a lifeline for all of us who are at home. Instead of going through things alone, you can share it with people, even if they are strangers. It becomes instantly, and infinitely better, knowing that you are not only not alone, but knowing that you are not struggling with the weight of this grief alone makes it easier. The old proverb, “Grief divided is made lighter,” makes a lot of sense and always has. Humans, whether we claim to be introverts or extroverts, have a need to share our victories and our defeats; we need to share those things that make our life experiences difficult and exciting. It makes sense that we would use social media as a vehicle to share this common collective experience of social distance and quarantine. It is something that unites all of us. We can all relate to it. But what it won’t do, is help you understand my chronic illness and how it to have to not be able to work or need to stay home. At the end of all this you get to go back to the normalcy of work and life, and all those things that all used to be normal. We get to stay home- struggling with our chronic illness.

Featured Image: ID 175227300 © Alberto Jorrin Rodriguez | Dreamstime.com

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Authored by: Liza Zoellick

Liza is a chronic pain warrior from Houston who has been chronicling her journey through chronic pain and illness on her blog: http://lovekarmafood.com. She is a frequent and valued contributor to the National Pain Report.

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To all: It’s been a busy quarantine. Having everyone at home leaves me busier than when I am mostly alone. Needy family members have required my attention and I have not been able to write like normal. What I wanted to share with each of you is how important you all are to me. Each of you that messages me reminds me why I write about all of this. Every time I hear your shared words, whether written to me personally or as posts on Twitter, venting your frustrations about doctors, or being alone, or your anger at the governments handling of opioids- they all reach me and give me what I need to write. You are all my hero.

Margie

Dear Liza, your article hits a home run. When job lose & quarantine began in USA the media talked about how people were gonna commit suicide and preacher came on giving up lifting words and all the chattering about when can the quarantine end or people back to work & the endless ads saying alone together. But people in chronic pain are always isolated, living life in quarantine from none ending pain sometimes with family or alone. But we are still isolated from getting adequate pain care, isolated by being put on a database, isolated by the insulting treatment from doctors,pharmacies ect. We are a virus that no one who doesn’t have chronic pain think they will never get. What if chronic pain was thought of chronic pain virus that was highly contagious because if you think of it, it is
So many immune diseases, accidents, ect that causes chronic pain but the world is segregating the very people who have chronic pain as criminals. The unpained people think chronic pain will never get them. I never thought I live in chronic pain.

Alan Edwards

Another heartening blog. G overnment agencies are arrogantly pontificating during the so-called flu crisis about the drug war and pain patients should prepare to take bufferin. Chronically diseased individuals will – short of a miracle or morphine- suffer for life and die.

Research the late Siobhan Reynolds if pain allows. She gave her all for us. She was related to the Kennedy’s -dying in a plane crash like JFK JR. Pain killed her husband as she was searching for a compassionate doctor around 2007. Her son Ronan survives.

Intractable pain has ended my ability to walk, destroyed my relationships and put me under police binoculars. It has harmed me more than cerebral palsy and other diseases which doctors recoil from treating. When covid 19 came, I knew it was overblown and the unending agony we experience, never makes the news.

Thomas Wayne Kidd

Thanks so much for your article. Unfortunately most people will soon forget about this. I appreciate your timely articles. God bless you.

Denise Bault

Yep, my life as a chronic pain person hasn’t changed much due to the pandemic. Didn’t realize at the time that it was “pre” preparing me for what’s happening to the rest of the world! Great post!

Martha

Hi Liza! Sending you an air-hug. Well written. I said to my 91 yr. old mother last week “welcome to our world.” Though I agree, we wish this on no one. Sadly, my life is not much different, quarantine or no quarantine. As the media & Drs. continue to talk in terms of weeks or months to get back to ‘normal’ we Chronic Pain Warriors know – this is our normal! Love to my fellow warriors.

Cyndee J Tolbert

Liza. I so can relate to your well written story. Remember you are not alone!

Pamela Osburn

Amen!!

Maureen M.

Liza, Well said, as always! It is our reality for sure. My daughter (who lives in Cali) sent me a meme a couple of weeks ago with a silly faced character and the caption said ‘The day I realized that my normal day is actually called QUARANTINE’!
Funny, but not funny because it then hit me like a ton of bricks and made realize that ‘yeah, my life has been this way for 15 years already!’
I live alone and have very little friends/family support…they just can’t/won’t grasp my reality therefore they behave as if I’m perfectly fine. Yup, that irritates me to no end!
But, I am Woman, hear me Roar! I keep on keeping’ on with the struggle and get through each day without them :-). Somehow though, this forced isolation feels a bit heavier though huh? I used to have a doc appt every 1-2 wks, or spine therapy every 2 wks (all have been on hold for weeks now) or run an errand here and there which I now realized has a lot to do with my maintaining a level of sanity and joy for me…getting out and being around ‘people’! 🙂
But, this is tough! It’s an added struggle that I don’t need… I feel like my brain just can’t switch gears… it just won’t allow me to feel the ‘increase’ in isolation and loneliness in order to protect me from the added sadness. I guess that is because the emotional pain of my life as it always is…is just too much to make even worse! Therefore, just that fact gives me tension headaches! ha!
Oh, but dare we complain. God bless those effected by illness from this virus, and the families who have lost loved ones…some have several in a single family. 🙁
The sad stories will begin to come out more and more very soon.
God help and strengthen the medical staffs, the hospital housekeepers, and all those in public that are working hard to keep us fed…food stores/restaurants offering take out etc.
God bless the world, and us who fight the fight of chronic illness not matter what.
Keep safe and keep strong sweet warrior! Maureen M.

Jeanie Rhodes

As always, Lisa hits the mark exactly. I love her posts, I believe it keeps many of us as pain warriors!