Spoonie dealing with everyday illness.

Everyday Illness and Other Struggles as a Spoonie

When you have a chronic illness or disability, it can be easy to lose sight of what is possible for your body when dealing with everyday illness or other struggles. Adjusting your expectations can have a positive impact on not only your peace of mind, though – it can reframe your entire approach to self care.

Chronically ill or disabled person holding a pill bottle.

Taking a Sick Day – and Keeping It to Yourself

I’ve been sick for the last few days. It’s nothing serious, just a regular cold. (Trust me, I get tested every time I get sick, and while I am fully vaccinated against COVID-19, I absolutely plan to keep doing so.) But still, it has been difficult.

If you are chronically ill or disabled, though, you probably already know just how much harder common inconveniences or even everyday experiences can be for those of us that are. 

For this exact reason, I don’t usually even bother mentioning things like a cold, fever, or small injury to friends or family. I don’t talk about how tiring regular experiences like grocery shopping or taking my kids to the park can be. 

I have learned to keep those frustrations to myself.

Why? It’s because whenever I have done so in the past, I have been met with responses reminding me that those experiences are tiring for everyone, or telling me that nobody likes having a cold or a pulled muscle. I cannot tell you just how frustrating it is to hear these kinds of replies when I am already well aware of how different I am from “regular” folks. And if you’re also a spoonie, I don’t have to tell you; you’re already well aware.

All of that unsolicited lecturing is enough to make you feel like garbage. People who know little to nothing about living with chronic illness and disability seem to have no problem comparing our capabilities to theirs, and if you hear those comparisons often enough, they tend to start becoming the voice you hear inside your own head when you’re deciding what you can and cannot do.

Chronically ill person taking care of themselves with medication and rest.

Readjusting Your Expectations as an Act of Self Love

The last few days, I’ve been very angry with myself. 

My frustration and irritation with myself has come from that voice in my head telling me that I should be able to push through my pain, my weakness, or even my illness or injury – all because other people can do that. Even though I have felt like complete garbage physically, I’ve felt even worse mentally and emotionally because I have felt like a failure as an adult, a mother, and a member of society.

Enough!

I need to let these thoughts go, and so do you! 

Whatever the limits of your capabilities are, it’s important that you learn them, accept them, and push your limits only when you really feel comfortable doing so and on your own terms. Don’t push yourself harder than you need to just because you feel like that is what society expects of you.

I know that isn’t easy to hear, and it is even harder to do. Trust me. I know that on a very personal level. 

We all tend to push ourselves beyond our limits on a regular basis, especially when we are parents, professionals, or otherwise have responsibilities. But prioritizing yourself and adjusting your expectations to match what you are comfortably capable of is vitally important to making the best of whatever situation you are in and improving your quality and perhaps even length of life.

How Can We Reframe Our Thoughts and Expectations?

It is extremely easy to tell yourself and others to cut you some slack, but it is a lot harder to actually do that. 

Today’s world is deeply entrenched in a culture of yes. We are told that the best way to make friends, nurture and keep relationships, and improve our professional opportunities is to say yes. We take on extra responsibilities, we help each other out, and we volunteer our time and energy to keep others comfortable and happy and improve our own lives – but how often do we consider the cost of all of that exertion?

What can we do to reduce our stress and the number of tasks on our daily to-do list? How can we reset our own expectations and that of those around us? 

It all comes down to prioritizing yourself and being more honest.

  • Be honest with yourself. 
    • If you are sick, you are sick on top of being chronically ill. If you are injured, you are injured in addition to your disability. If you are tired, you are even more tired than your usual chronic fatigue. Your limits are going to be different than those of other people, even if they are similarly sick, sore, or sleepy. You have to acknowledge and understand that before you can work on setting better boundaries for yourself with others. Start with being real with yourself and go easy on the person you see in the mirror – they’re doing their best!
  • Be honest with those around you. 
    • Your partner may be supportive. Your parents may be understanding. Your kids may be patient. But they aren’t experiencing your illness or disability firsthand. As such, you have to be open and honest with them about how you’re feeling ,especially when you’re coping with a stressful situation. The more honest you are with them, the better they can understand and assist you.
  • Relax your schedule. 
    • When I got sick a few days ago, my life didn’t stop. I still had things to do, children to care for, and personal care to attend to. However, my usual schedule was suddenly unmanageable. So I adjusted it, and I advise you to do the same on days that you know are going to be difficult. If that means changing your plans on the fly and ordering takeout instead of cooking or making similar adjustments, that’s okay! You can still get everything that’s absolutely necessary done; you just might need to do things a little bit slower.

It can be difficult to do these things, especially when those around us are suffering from compassion fatigue. (That’s something we will talk about at length in another post!) However, it is critically important, even if you have to be the “bad guy” once in a while.

As a final note, if you’re still struggling with the idea of putting yourself first by setting boundaries with yourself and others, I implore you to think about it in the following way: If your child or your partner was injured or ill, would you allow them to continue their everyday responsibilities as normal? 

Would you let someone talk down to them about how lazy they were being or how they needed to grow up and get over their situation to get things done? Of course not! You would make accommodations for them and adjust your expectations.

So, why do you do that for yourself? Why not take care of the one body you have while you’re on this planet – and the soul that resides within it?

I hope that you are well when you read this, but if you are not, I hope you will take this as your sign to give yourself a break. Put your feet up or your head down or whatever you need and remember that your normal is different from other people’s – and your sick days should look different, too!

Leave a Reply

Your email address will not be published. Required fields are marked *