I thought I would post the comparison between the normal person’s Pandemic Life vs. My Disabled Life… currently. Because there are similarities and differences.

Pandemic life vs. disability life for me

Samesies

The same with a normal person’s experience with COVID-19 and having to stay at home with the stress, anxiety and rapid changes in their lives

How my experience being disabled is similar to the Pandemic Life

  1. I have lost my job to being disabled, So Many have been laid off due to the COVID-19 pandemic. I remember what that felt like. And I remember all the emotions and fear and anxiety that comes with that.
  2. I went on disability and many are going on the Canadian EI package (Canada Emergency Response Benefit) to supply income… and both of us are aware of income instability. This doesn’t match our actual income (Mine more so, obviously, since it is less than 2000 a month)- This, of course, is different for all countries. I am using mine as an example which is a decent example, some places are not as good and some are better. Either way, income instability. This is extremely stressful and anxiety-inducing
  3. I too have faced an unpredictable future. Due to illness, I cannot predict when it will affect my life, my career, my income… and when, or if, I will be able to work again. And many are facing this unpredictable, anxiety-inducing stress, of not knowing when they will be back at work or recover from this. Or if they will get sick, or their loved ones.
  4. I have a constant worry about my health, more so now with my risk factors. And we all have that same worry now.
  5. We are all overly stressed and with chronic illness, I am bombarded with stress all the time… which increases symptoms and pain and lack of sleep. I am sure many can relate to that.
  6. Isolation has impacted my self-worth, my sense of self. It has impacted my depression and mental health. And these impacts will affect others to various degrees as well. (Effects of social isolation)
  7. I felt like my life was paused. I felt like it was stagnant. Like nothing changed and I was stuck. And I know a lot of people feel the same way. I had that antsy feeling for a while too as I adjusted.

Difference between Pandemic Life and Disabled life for us all… we are all sharing these factors.

  1. The main difference is that we are worried about our friends and loved ones… and that extends our worry and stress Beyond ourselves and increases it. And we cannot physically connect with them to make them or ourselves feel better.
  2. We are all bombarded with constant information about COVID-19. Deaths, and horribly sad stories, and bad scenarios and breaking news… and more news…and every TV show talks about it… and it is all over social media. And this amplifies our stress and anxiety.
  3. This is all over the world. And we have an abundance of empathy for other people we do not know going through similar or worse scenarios. There is also fear due to the unpredictability of how long this will last.
  4. There will be a massive global economic fallout for years and years due to this that will impact us all for a very long time.

Not samesies

How my disability life is not the same as pandemic life

First, some real basic things that apply to most chronically ill people, in general, I should mention:

  1. We are used to people not caring how we feel. If someone asks how we are doing we Know they do not want the answer. We feel isolated in this way. Suffering in silence. Now… people are checking on each other, really checking on each other, to see how they are doing and coping and managing. And I think it is really good people are considering their friends and loved one’s mental wellbeing. Just sad that with chronic illness we are taught to ‘push through’ and ‘put a facade on’ and ‘fake it till you make it’. Just say fine. No one cares anyway.
  2. Working from home accommodation is rare for us. I was told it was simply impossible. Impossible!! Many disabled people cannot get it. Some can. If they are lucky and that is a good company. When the pandemic happened it became abundantly clear companies Could do it and Chose not to.
  3. People have been heard and quotes saying that COVID19 didn’t matter to Them because it only would harm elderly people and sick people. So instead of feeling not valued by society, I now Know I am disposable to society. I think that knowledge will stick with me for a very long time as a painful realization that my life means so very little.  But comments like that have stuck with me. It hurt. A lot. What is the value of a life? Apparently, that is relative to how useful you think that life is.
  4. Since the pandemic involves Society… there is a world flush full of Zoom happy hours, live stream concerts, free things to do and try, Netflix watch parties. Endless sources of entertainment for the perpetually bored. We never have that. We have to find ways to fill the void of work, if we can no longer work, in our own ways, cope with isolation in our own ways. We have little ways to connect like that. So many people are getting together to help people get through this. With chronic illness disability being homebound? You just figure it out. I figured it out, the hard way because it is hard to adjust long-term to your entire life is altered.
  5. We will always have job insecurity and financial instability due to being chronically ill disabled. We can lose a job in a moment, just like that. And our financial wellbeing will suffer a lot. And being disabled permanently and unable to work… that financially instability stays. And the stress of it is always there.

The difference I see for myself and perhaps others experience this as well

  1. I have no end date. Social distancing and isolation will not end for me. It is just the way it is. I have to pace my energy. I have to watch my pain levels. I can socialize for short durations a few times a month, some months, but that is about it. My entire life was altered and I know it will never be like it was … it can’t be. My functionality just went down and down and down until I couldn’t work or much of anything. And maybe one day I will have a little more functionality but it will not be like it was. I am used to getting what I can and knowing I can’t have more. So I appreciate what I can have. It is precious to me. People have to adjust to the short term, yes, and it is difficult, yes. I had to adjust to the long-term outlook that this is all I get. And that is a little harder on the spirit.
  2. I have Major Depressive Disorder and complete isolation is something I know well since I self-isolate when it isn’t managed. And having to self isolate due to my health means I have to very carefully manage my emotional wellbeing. The anxiety hit me hard and I had to manage that Fast. Everybody with mental illness likely knows what I mean.
  3. Stress impacts my health. Fibromyalgia flares and migraines which are already daily become longer and severer. Symptoms get worse. I have to kick up all my coping strategies to endure that increase in stress… all the time to manage this increase in symptoms and pain. All my appointments and tests have been affected. I have to miss doctor appointments. I cannot see specialists or the pain clinic. Management of my pain and illnesses is being affected. I cannot predict the outcome if I get COVID19 due to my health risks and I just have to deal with that fact. As many of us do.
  4. People are antsy. Because it is new to them. I have long since learned I need to pace and live a slower lifestyle. Because of pain and fatigue and vertigo. It is hard to go from being immensely busy… to not. But I had to and so this is not something I had to adjust to… I already have. I remember that feeling but it was long ago.
  5. People are bored. I am not. I had already adjusted to this as well. Filling the void of work to feel productive and have some life satisfaction is difficult. So I have picked up hobbies and learned new hobbies to fill this time in the day.
  6. People have more time to fill than I do. I only have a little number of usable hours in the day I can actually choose to do anything at all… the remainder I am recovering, resting, or non-function. So it is hard to not find things to do when I have a very limited about of time to do things. What is hard is that I want to do more and I cannot actually do that. Ever. But people have a Lot more time to fill in the day. So they often feel like they are wasting it. But the fact is, one does not have to do something for every minute of the day for it to be a good day.
  7. I am very limited and that isn’t going to change. It is hard to do housekeeping let alone all the things they say we Should do to clean now to keep things COVID19 clean. I can’t manage that. I can barely manage anything. Like I said, little time for anything. People are bored. I have little options. They have so many options and choices to be bored. I wish I could do so many things and can barely do anything at all. I am envious of their choice to be bored when they choose to be. And doing something when they choose to. And I just have to fit a small amount of something in this little tiny window of functionality. So I envy that. But I value my precious times of functionality and the things I can do. I value the things I Can do so very much. I have to. It is my life. And it is the only life I Have.
  8. But not every day has to be productive, that is another lesson I learned a long time ago. But I Also learned you have to do a little each day or motivation suffers and lethargy sets in. Sleep routines get messed up. And things get really out of whack fast.
  9. I feel quite ill every day. It is hard to do things. Immensely hard and so draining. So much effort. I find mental and emotional worth in doing small things but I do not feel well at all and worse after. Constantly feeling just dizzy and out of it and in pain… not funsies. But distractions are good. And then rest is also good.
  10. I have to adapt a lot of what I do to my limitations. And the amount of time I can do them for. I have to be infinitely careful. Laying down is best for my vertigo and dizziness at this time… but not much can be done that way… some things can though… like typing this.

It comes down to two unchangeable facts about my disability a) I have to pace and cope with this life of being unable to function most of the time at this point. A slower pace is just normal. b) I am very limited in my possibilities, even when it comes to things I can do at home.

So there are similarities for sure. And differences. I empathize with their experience definitely. I feel for everybody. I remember the turmoil of emotions well. And in these chaotic times… that is amplified. It is fine if people are having a hard time coping… I know I did. And I have coped with a lot of what they are now enduring already… just because I had to a long time ago but it was not easy. That makes it a little easier to handle this isolation and social distancing when you already had to cope with chronic illness and disability that slowed you down to a lower level of functionality. My experience will just not end and I have more limitations even at home. We all feel some of the same things though because none of us have been through this before and it is scary and makes us all more stressed and anxious. That is something we have to remember. Healthy, or not, old, or young… we are all experiencing this for the first time. We are all coping with it. We are all just trying to get through it. We all worry about everyone we care about.

It is fine to note the differences. Clearly, they are there. But important to note the similarities… people are suffering in many ways we can relate to. That we know were a struggle for us to cope with. And so many people are struggling in so many ways. It is not about who is suffering more. It is about the fact we are all struggling with this global pandemic and it is hard on us all. We should have empathy. These are hard days… and hard days to come. We have to be good to each other. We are always going to be chronically ill. That will always have limitations. Pandemic. No pandemic. We will always cope with things people do not understand. That doesn’t change the fact that we can have empathy for all those experiencing pain and suffering we know a whole lot about. I know I do. My empathy bleeds right now. 

Stay healthy, my friends.

See more about the pandemic

Social isolation and mental wellbeing

Coronavirus: tips on being stuck at home

Coronavirus: The chronic illness view
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20 thoughts on “Pandemic life vs. disability life for me

  1. Excellent post, Nikki!

    After my own 30 years of isolation, it feels strange to see so many (fitter) people suddenly dealing with some familiar psychological side-effects of enforced solitude.

    For once, my unnatural existence seems (temporarily) a little more “normal”. 🙂

    Liked by 1 person

      1. Yeah I tried not to get into too much detail into my symptoms and so forth. But it is true some of us have a Very different lifestyle from healthy people they would be shocked by the difference.

        Liked by 1 person

  2. very well done for talking about it/exsplaining about how your effected.people never see the every day effects .there
    views/judgements very Snotty Nosed .i am disabled have m.e .long list health issues ..ibs..migraines list goes on .i take part in a lot lot research.i am from England
    my blog,http;//mark-kent.webs.com
    twitter,supersnopper
    i am all so co-Author of a book ,JUST PUBLISHED .book is about Disability and Sex .,can send you a Link

    Liked by 1 person

  3. Great post, so many points that both healthy and chronically ill people will relate to. I think there is a real absence of mainstream articles about “surviving lockdown” which are written by people with real experience of it, whereas your post comes from a position of knowledge and experience. As always, thank you for sharing.

    Liked by 2 people

  4. Such a great post Nikki! I’m glad you highlighted both the similarities and differences. I think it’s especially important for healthy people to remember that limited functionality means isolation looks different for the chronically ill, as you pointed out, and for those of us who are ill to remember just how new all this is to people who don’t have any experience with being stuck at home. Great points for fostering understanding and empathy all around!

    Like

    1. I think it is important to look at both sides. Sometimes people get locked into one it is hard to see the other. And I get that… I can get frustrated by people expressing their boredom when I wish I had the actual energy to DO things. But we have to look at the whole picture and I do remember what it was like in the beginning when I stopped working… lots of similarities to be seen there.

      Like

  5. Well said Nikki, I think many of us are shying away from a post like this, but it still needs to be said and you said it perfectly, stay safe xx

    Liked by 1 person

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