Bridging the Awareness Gap Between the Abled and Disabled Through the COVID-19 Quarantine
By Kristin Asker
Before I start airing my thoughts on COVID-19, please remember that I'm not trying to diminish your quarantine experience. I understand that this virus and the subsequent isolation it causes can induce trauma. The simple fact of not being able to leave your home is traumatic. Changing your daily routines is traumatic. Becoming deathly ill is traumatic. The financial impact this pandemic will have on businesses and society at large; and, more importantly, on the individuals losing their jobs is traumatic.
All of these things create unstable living conditions. Also, since mental healthcare is something that society mostly ignores, we might see an increase in cases of severe mental health issues stemming from people not being able to distract themselves with work and friends. People who rely on these distractions must finally learn to live with themselves.
We don't know the long-term effects of this pandemic on individuals, nor its long-term impact on businesses and governments. What we do know is how long-term isolation affects people with disabilities, chronic illnesses, old age, and other health conditions. We live this quarantine every day, and we have learned how to deal with the isolation, the lack of mental activity, and the restrictive access to everyday life. However, these restrictions are caused by our own bodies rather than a governing body.
Freaking out or calm as a cucumber?
Whether you are freaking out, or you think that this doesn't impact you personally, this pandemic will shift society.
Perhaps you are annoyed at having to be quarantined, or perhaps you are afraid to go outside. I understand how uncomfortable it feels to have to stay indoors. How frustrated you must be by staring at the same four walls and only being able to interact with people over social media. How overwhelmed you must feel by having to face the quirks of your mind and not being able to distract yourself from them properly.
I empathize with you because I go through the same set of emotions you are experiencing now every day. I want you to listen to my experience and use this post as motivation to create a deeper understanding of a life so vastly different from your own. However, I don't want you to feel unimportant or like your experience doesn't matter. In this time of uncertainty, we must stick together.
Isolation gives you a rare glimpse into the lives of the chronically ill, elderly, and disabled. Our lives are dictated by our bodies, and our health can restrict everything that makes us feel like ourselves (our jobs, our friends, our hobbies, or social activities). Our mental, physical, and financial well beings are constantly in the hands of others.
Sita Gaia talks about what it’s like to live with epilepsy and offers a 3-point plan to support your loved ones manage their life-long experiences with chronic illness.
Hopefully, after you've lived through this hell hole, you will understand what it's like to live a life where the "all clear" never arrives and there's no chance of going back to a normal life. I want you to be able to walk away from this and reflect on your experience. Hopefully, you will be able to recognize your current vulnerabilities and feel more empathy towards those who will continue to live them once quarantine is over.
The pandemic will end if you're able-bodied
For those of you who are able-bodied, the isolation and instability will stop. You'll eventually be able to leave your house, meet up with your friends, and have that dinner you've been craving. You'll be able to walk around a grocery store without having to worry if the person next to you is contagious. You'll be able to go back to work to be mentally challenged with problems only you can solve.
I will never get the "all clear." In reality, this pandemic and its subsequent quarantine hasn't changed my life at all. My quarantine began three years ago. No government recommended that I should stay home. Technically, yes, I can leave my house whenever I want to when we aren't in quarantine; no person forces me to stay inside. However, my body and its physical and mental blockers confine me.
What is the difference between someone telling you that you can't leave your home and your body or mind making you stay home? I would argue that, in the metaphor of this quarantine simulating life as a disabled person, the difference is negligible, which is why I want you to try to put you in my shoes.
The grass truly is greener on the abled side
Imagine what it would be like if the "all clear" never came. What would it be like if the quarantine you are experiencing now wasn't existential, but intrinsic and put on you by your own body? What if due to illness, disability, and subsequently, how society was built generations ago, none of the tools you needed to be able to overcome your quarantine was available to you?
It doesn't matter if you have a healthcare provider who listens to your concerns and tries to ease your suffering, they are still not able to cure the illness or disability that causes your isolation, pain, or physical and mental torture. No matter how much motivation you muster, you cannot hold down a job, because no one wants to hire an unreliable sick person.
No matter how much you meditate, exercise, manage your medications or your routines, your body is still stubbornly retaining the quarantine within you. Your body believes that all the signals sent from the defective limb or the incurable illness must be treated as a life or death emergency. This drains you of your energy, motivation, self-image, and will to live.
Not only would it mean a drastic change from life before quarantine and social limitations, but it would also mean a realization that you can never go back to normal. You may never hold a job again, not because your brain isn't good enough at problem-solving or communicating with others. But because your body is setting limitations to keep you safe and society is not flexible enough to help you cope with those limitations.
Not only is the quarantine you are in limiting your movement outside of your house, but it also restricts your amount of energy throughout the day. It causes you pain by reminding you that things aren't really ok no matter how much you try to pretend that they are. No matter how many pain killers or medications you take, they are never going to help you lift the quarantine under which your body has put you. Yes, the drugs might help you go from a state of being completely isolated in your own body to at least allowing you to interact with the world through social media or moving about your house. Still, they can never cure the actual problem and, therefore, never truly lift your isolation.
If you are non-disabled and you are facing financial instability due to the pandemic, please remember that when all of this is over, you can open your door, go outside and start applying for a new job or go back to your old one (at least in Sweden). You can commit to a long term contract. Many like me cannot.
Due to my illnesses and disabilities, it doesn't matter if the jobs are out there, I cannot do them. Due to my body being drained by trying to manage my illnesses and disabilities, the amount of energy I have to get through each day is limited. As my symptoms vary day to day, hour to hour, there is no constant stream of energy that I can rely on to get me through my day.
I can't go out into the world and find a job. I can't work "regular hours" because despite the routines I strictly follow, my symptoms vary independently of what I do. Sometimes I need to recharge in the middle of the day. Sometimes I run out of energy after being awake for an hour. Other days, I can fully use my brain for hours on end while my body is acting as a completely useless vegetable. Sadly, spontaneous 4-hour naps are not a part of most hiring contracts.
And even if I was to find a job that could work around my sporadic energy levels, I will eventually run into a wall where I get so sick for months on end. My symptoms become so unbearable that I have to go back to being fully isolated for days, weeks, and sometimes even months, just to be able to cope with getting up in the morning and feeding myself. Not only does it make me an "unreliable" employee with a great need for a flexible employer, but it also leaves me vulnerable to be thrown back into the mental despair and torture that isolation causes. A state of isolation that the world around me, until COVID-19, had no chance of understanding or experiencing for themselves.
Open your heart and learn about the experience you were never supposed to have
I would like for you to reflect on how your experience during this pandemic and its potential to simulate a life so vastly different from the one you lead every day. One where frustration, loneliness, and anxiety are your daily companions. One where the access to small joys like going for ice cream in the spring sun or having a drink with your friends in a pub is no longer available. A life where financial instability is the constant and where a minor choice from someone else can derail what little stability you have managed to build for yourself.
The greatest lesson you could learn from COVID-19 is what it's like to lose the ability to choose, where all your actions are out of necessity, and basic choices like seeing your friends lose their priority. Whether you are restricted by your body or by this recent quarantine, you are experiencing what it is like to prioritize survival over what makes you happy.
For disabled people like me, the grass is greener on the other side. We see the crown of health you wear, which you have no idea you carry, let alone you have never noticed on others. Due to a series of unfortunate events, you have a golden opportunity to learn more about a life you were not meant to lead. You can use this quarantine to reflect on life and the differences between your experience and someone else's. You can use your new-found knowledge to improve life after COVID-19.
Your quarantine will end. Mine will not. Suddenly you are forced into a situation, much like mine, where you are not in control. Where it doesn't matter how much you want things to change. Where it doesn't matter how much you worry about your future because it won't change a thing.
Hopefully, this pandemic can help you see society's need to become more accessible for the disabled, the elderly, and the chronically ill. I urge you to really feel the loneliness, the fear, and the anger caused by this pandemic.
If you need help coping with emotional, mental, or financial stress, you can always reach out to someone from the endometriosis community (aka a spoonie). You can also Google tips and tricks from disabled people on coping with isolation. We can advise you on everything from how to stay busy and finding hobbies that challenge your brain to how to find a side hustle that can help you earn some extra cash when your finances are crashing. We are here to share our experiences, just like we are when the world around us isn't visibly on fire.
The endometriosis, chronically ill, and disabled communities are well equipped to deal with this crisis because this is our never-ending normal. For us, it's high alert time all the time. Let us help you cope, and in return, listen to our stories and see what it's like to live in a life-long quarantine. You might think of us as a negligible minority, but the truth is that we are one of the largest minorities on the planet. The only reason you don't see us is because society's structure always keeps us quarantined. Help us change the world for the better when all of this is over. Become an ally.