One thing I have learned living with a chronic illness is that it is perceived as a weakness. Often as something you should be able to ‘control’. Often as something you should try to ‘cure’. Often as something you should have been able to ‘prevent’ and it is somehow your fault that you are ill, to begin with.
Yet chronic illnesses are rather common, so this seems sort of out of place thinking.
And we, it seems to have little place in society. People are put out of place having to accommodate for us. I have been refused accommodation because I do not have a ‘physical’ disability. I assume that meant not a visible one or a common one. I have likewise not had accommodation because the office itself was simply not designed for it… so it wouldn’t work. Wasn’t in the planning for people to think about those that might need ergonomically correct environments. Since I wasn’t even sure it would do anything since I had, again, never been offered the assessment process, to begin with, I just made do. Really what I would like… It is Not having fluorescent lights. Which are a nightmare. There are studies to say they are bad for everyone. Including students. But the world… doesn’t care about wellbeing. Not for the chronically ill and not for everyone else.
It is a backwards world really. Where you are expected to take care of your own wellbeing but it isn’t really encouraged by society in the least bit. And something has to be Really proven to be Bad before anyone does anything about it. If then.
And we could have shorter work weeks. More holidays. But we don’t. Because life satisfaction isn’t something we value. It is about corporations and greed and making money and your career. And stress and managing stress. And pushing through it. And being grateful for it.
So people are fine with these lifestyle issues and life satisfaction issues. And so we will never be the happiest people in the world. Or the healthiest. But then you get ill. And you still have to fit into this world, like you are healthy. Same work, same stress, same game but with fatigue, pain, and illness. But remember… you should have prevented it, you should control it and you should aim to cure yourself. And you shouldn’t complain about it either.
But that isn’t our world at all. We have a completely different world. Like we live in an alternate reality that people have absolutely no comprehension of. It is no wonder they call chronic illnesses invisible disabilities. It is that invisible. We do think about wellbeing and quality of life a lot. We think about all the things we can do to improve our wellbeing and quality of life to sustain the life we want to live or maintain or have balance. And it is a struggle for many of us to fit that into the actual world. How do you incorporate all the ways you cope with illness into work life for example? How do you incorporate all the ways you cope and manage a family and household? Or socializing? Or having a holiday even? How do we manage the added stress of chronic illness?
Because this society isn’t designed to help us one bit. I think about this opiate crisis even and the ones who are suffering from it are the people with chronic pain. Absolutely no one seems to care about their voice, suffering or the complex problem of chronic pain. But they are in a fundamental panic about the smaller fraction of people who get addicted… a problem and one that has to be looked into considering the serious harm with Fentanyl. But what about the massive amount of people now with unmanaged chronic pain? Society is completely silent about that issue. That is invisible.
So we are expected to fit into society and society won’t fit into us. We have a society that has little desire to even think about well-being that much. As a Canadian, I know my country does better than Americans, in some ways, at this simply due to health care alone but some other factors as well. But I can name countries that do far better than we do. And I wonder about the quality of life. Of the quality, we think the average life should be. What we value in that life. And maybe everyone should think a lot more about the quality they want in their lives and in their society as a whole. Maybe if they thought a little more like the chronically ill have to then the chronically ill wouldn’t have such a hard time fitting into society so much. Maybe there would be places for us. Maybe all our lives would be enriched. I think of companies like the average one. Do nothing. Then companies like some tech companies that bend over backwards for the wellbeing of their employees. With nap rooms. Standing desks if they want them. Exercise rooms. Places to meditate. Daycare for free. Everyone gets good holidays. And you know why? Because it makes people happier and happier people are more productive. Imagine all companies doing that. Imagine that as the norm.
Just imagine a parallel universe where society cared about wellbeing. Where there was strict product control on what you could put in things. Drug studies had to be done with a third uninterested party evaluating them to ensure they didn’t fudge the numbers. Where work hours were 30 a week. With 4 weeks holidays. No matter who you were. Where every office had an accessible gym, nap room, place to meditate, daycare. Standing desk or bike desks for those who wanted them. Government programs teaching mindful meditation, tai chi, and basic yoga ages 12 and up. Where supplements are highly regulated and studied for uses. A society that encourages walking and biking to get around. (Aside from winter). I can only wonder at all the things we could be in a world where well-being is actually considered an important part of daily life. And in such a world how would that change the lives of those with chronic illness? In so many ways I expect.
But that isn’t this world. You have to fit in somehow. And the stigma is pervasive when you simply don’t.
More posts on thinking some thoughts: