What a “Good Day” Really Means With Chronic Illness

As someone who has lived with chronic illnesses for over twenty years, I know that ‘good days’ often come with people assuming I am well. People saying I am looking better, or I seem well today do nothing but show people assume our symptoms come with on and off switches. Today I want to chat about what a good day really means with chronic illness, and how it feels from our side of things.

A Good Day Doesn’t Mean Symptoms Disappear

A good day is not feeling well, and I think this is the confusion that many people in society have because they know and understand feeling better after being sick. But, in reality, what a good day really means with chronic illness is that we can cope better with our symptoms on those days.

The pain, still exists, the fatigue is still there, all our symptoms may still be present, and our mobility issues don’t vanish. On these precious days, the symptoms are quieter, our recovery time might be shorter and energy a little higher.

These days, where our symptoms whisper instead of scream, are less overwhelming, less tiring so we can be happier and do a little more. Days like this make ‘faking’ being well easier and we can do tasks that we cannot on our usual days, but we still feel our illnesses in the background.

Pacing Is Still Essential

The feeling of happiness we get on a ‘good day’ is hard to describe, but it can make us feel so excited to do things we cannot usually do. Like cleaning, putting things away we were not well enough to, hobbies we have longed to try.

But even on these good days, we still need to pace our time carefully because overdoing things on a good day can cause a flare of symptoms. This excitement can lead us to forget our limits, something I have often done over the years!

But what a good day really means with chronic illness is constantly calculating energy and pain levels and second-guessing which task to do. I have discovered that altering tasks to make them more accessible can mean we can still do the things, just with some differences.

Resting between tasks, sitting while cooking, splitting tasks over several days, and using mobility aids all help preserve these good days.

Rest Looks Different on a Good Day

Rest looks very different on a bad day, it can mean sleeping, lying in darkness, staying away from people and noise and just trying to survive moment to moment. These are the days that people do not see, the days that feel so isolating and hard to get through.

What a good day really means with chronic illness is that rest can be reading or slowly crafting. We can sit outside or by a window, watch our comfort shows and see or speak to friends

This is what I wish able-bodied people could understand, doing something soft and joyful does not mean we are suddenly healthy.

The Invisible Calculations Behind Every Good Day

Now, I do need to say that often good days don’t come out of nowhere, often they come from careful calculations from the days or weeks before it. I know for me, these good days are often because there is something happening that I want to be ‘feeling better’ for.

What looks like spontaneity, is days of ensuring medications are taken, water drunk, planning out when I can shower or what I will wear. I will sacrifice other activities and choose carefully what deserves my limited energy.

When people see me out and about, it is because of hours of preparation and days of recovery that is hidden behind the scenes. The hidden costs that nobody see, are why I can do more on a good day, but also why it hurts when someone insinuates, I am getting better.

But what a good day really means with chronic illness, is days of heightened symptoms, more time sleeping and once again being unable to do the things you want to do.

Grieving and Appreciating at the Same Time

A good day can hold so many emotions, gratitude and joy when we can see friends, or sit outside or get dressed. Happiness at a glimpse of a life you want every day can be exciting and it can be hard to hold yourself back from doing too much.

But behind that, is a grief that is hard to put into words, a realisation that no matter what it will not last. The frustration with a body that will not cooperate and a society that cannot seem to understand what our reality is.

There is a pressure to ‘make the most’ of the rare, good days, and there is a guilt around resting when symptoms improve. But we know what a good day really means with chronic illness, and that doing too much today will only make everything worse tomorrow.

We in the chronic illness community want people to know that these good days are real and they are valuable. We still exist despite the chronic illnesses and that rest is valid and needed even on good days. Needing accommodations doesn’t disappear because our symptoms have eased to a manageable level. It isn’t becoming non-disabled for a while what a good day really means with chronic illness is having enough space to breathe; to feel a little bit more like yourself again.

Thank you xx

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