We all have a way to measure our lives. Our values, standards, and principles. The problem is when we become chronically ill… these often do not change. Certainly not right away and it causes a lot of friction between who we Are and who we think we should Be.
Think about these traits I have about traditional work:
- Always learning new things
And these are all traits I valued when I was healthy (healthy—er) about myself. And I was proud to be that way. I am not those things now. And I can’t be. You can’t be reliable and dependable when you cannot function from day to day, moment to moment, and need to nap to just get through the day. And it is hard to be a hard worker when you are so dizzy and in so much pain you just pray for escape… just try and get through the day.
Here are the traits I have about non-traditional work like hobbies:
- Enjoy what I do
And those are values I have now when I work on things I can do, when I can do them. I have to be flexible because I cannot function all the time. And my standards about many things have changed. What I consider to be a clean house, for example, has altered. How much I value the people I care about has evolved. My empathy for all sorts of pain and suffering has increased. Lots of things change.
When old values die
But there was a time when that work, well, I considered it ‘lesser’ and ‘less valuable’ and ‘not important’ and therefore without traditional work I felt utterly worthless and useless. I could not sustain the values and standards I had embedded in me that I used to succeed and feel good about myself in traditional work. I could not sustain work. And I felt like I personally was a failure. And really I wasn’t. I was exceeding my limits. I was not capable of work. And I still measured myself against that same standard even though I was incapable of achieving those standards and values. I was using to wrong measurement of work and productivity.
It took a lot of time to value the sort of non-traditional work I am capable of doing. Things I do that fulfill me and make me feel productive.
Our old selves
We cannot measure ourselves to our past selves that were more productive in traditional means to our current selves that are not. It is the wrong measurements being used. I still think all the traits I had were awesome traits to have when traditionally working. And I certainly wanted to exemplify them in myself. But I couldn’t. I was too sick to be reliable. Too sick to be dependable. Too sick to have ambitions. And I judged myself for it. And others judged me for it. And when you fail to achieve things, and fail to be the values you hold, of course, your self-worth suffers. Of course it does. You never measure up. But when we change our values and standards and the way we measure our life satisfaction… we can finally feel some peace with who we are.
A lot of people believe that work is the main value to life satisfaction. When we are chronically ill we know that well-being is vital and our life satisfaction is measured by many different things…
- Having a good pain day
- Getting a bit of housework done
- Going out for coffee with a loved one or friend
- Spending time with family, friends, our spouse
- Finding things we are passionate about that we can do
- Reading a good book
- Learning something new
- Spending time chilling with my pet
And an infinite amount of little things every day we have gratitude for. Just small things that are important because we know well-being is a measurement with so many little things, all of which are important to help us cope with that which we cannot change.
So I know sometimes we get a chronic illness in the most productive years of our lives. But let’s pretend we never did. We worked hard. We had a career. And we retired at 65 or early retirement. What then? Would we then think we are worthless because we could no longer work? No. Fuck no. We had Earned that retirement and maybe we will work a part-time job to keep ourselves busy but we will also engage in hobbies. And Vacations. And all the things we want to do. Without any guilt about it.
With chronic illness, we are chronically ill. It is a fact we cannot change. So likewise we can’t feel like we are worthless or not productive enough. There should be no guilt in this fact in our lives. And like someone that is retired, we should find the things we can do that make us feel good about ourselves. I know it is different. All I am saying is that in a retirement scenario people do not punish themselves so very, very much.
All I am saying is that…
Values and standards we measure ourselves by Should change and adapt with our lives. But they lag behind a lot. And we struggle with our sense of self because of it. But life can abruptly change. And it will make things all our of sorts for a while. Sometimes a long while. As we try to adjust… or try to fit into a life that no longer fits us. And eventually, we will have to adjust our values and the measurements on which we measure life satisfaction. And we will realize there are so many important things in our lives to value. And the only measurement is being better than the day before, having a good day, and having a sense of fulfillment, and nourishing the relationships we have… and other valuable things.
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