When Your Body Says No -

Yesterday I went out to get my hair trimmed and to pick up a couple of things from the shops. It’s something most people do in between other jobs, but for me it was a big trip that would have lasting effects on me for days. Internal and external expectations for tasks are often very different, and the world can assume that opportunity should be answered with yes. But living with chronic illness means navigating the world in a body that acts differently and when your body says no, there is no fighting it… we must rest!

The Expectation vs Reality Gap

Society has a lot of expectations, positivity, productivity, consistency, and there is an invisible pressure on everyone to keep up. But when you cannot meet those expectations, there is a big emotional impact, and we can often turn on ourselves.

It can almost feel like you are trapped inside a body that is saying no to all your hopes and dreams. Invisible illness especially can come with an assumption that you are faking in order to not have to work and that we have no right to benefits so we can live.

Disabled life is not something anybody wants, and the disconnection between what society assumes about us and our reality is real and valid. It is not you being lazy or not keeping up, it is an inaccessible world that doesn’t understand or know our reality.

Low Spoon Days & Chronic Illness Fatigue

It is so hard to explain what low spoon days feel like, I think it is because everyone has felt tired. But have you ever done nights and been unable to sleep during the day, while having the flu?

This is the closest I have come to the feelings of brain fog, body pain, and physical and mental exhaustion on low spoon days. The difference is that it can happen to me at any time, this overwhelming feeling that I cannot push through.

Every day I experience a lighter version of this, which makes everything I do a choice of what I can spend my energy ‘spoons’ on. Washing my hair, dusting a shelf, writing a blog post, all take from the small amount of energy I have to last a day, a week.

When your body says no, there is no pushing through, and this unpredictability of energy means that I have to plan everything out. Making sure to rest between each task means only one or two things can happen each day.

Invisible Struggles

I think the main reason behind the disconnect between what society assumes about us and the reality is what people don’t see. Often, we are misunderstood and not believed because government and the press like to vilify us as scrounging when the truth is we are just trying to survive.

This often leads us to mask our pain and to fake feeling well when we are out or with friends and family. It is exhausting to try and explain why you are sick or why you are unable to work and so often it is easier to choose not to.

However, just because it’s unseen doesn’t mean it isn’t real, and life with chronic illness needs to be seen. We need to be on social media and speaking up in government and yet when your body says no that just isn’t always possible. How can the world see us, when our reality is often spent at home in bed.

Feeling “Behind” in Life

I was not born disabled and did not become sick until I was in my early twenties, I tried so hard to work. I went out and pushed myself again and again to try and measure up to the pressures of society and failed every time.

I needed to grieve the pace I couldn’t keep, and to let go of milestones that often felt delayed or out of reach entirely. My life and my expectations had to let go of those pressures to catch up so I could adjust to a different timeline.

I came to realise that it is completely normal to grieve, and for that to happen again, and again. I needed to feel that frustration and to let go of the shame of being unable to work, something that I felt so deeply for many years.

Redefining What a “Yes” Looks Like

When your body says no, it can be tempting to allow it to steal your joy and it did for me for about a decade. It was only when I reframed what success and productivity meant to me living in my reality that I started to change my life.

I started to honour my body’s limits as wisdom and self-care, not failure and to take the wins no matter how small as meaningful. I chose gentle living over constant striving, slowing down the pace of my life and going with the flow.

I stopped trying to force myself to feel positive, and instead I began really appreciating my little life for the reality of what it is. Living with intention, mindfulness and appreciation of what I have instead of chasing what I wished my life was like.

You are not alone when your body says no, there are so many of us our here and there is a large community on social media and in groups all over the internet. Your pace of life is not failure, it is valid and when we stop pushing against what our body can do, then we can find true happiness and acceptance.

Thank you xx

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