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.
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