High-Functioning Spoonie: The Problems of Living in Between Sickness and Health

It’s the most amazing experience: gradually getting your health back after being sick for so long. 

Finally, you can do all those things you’ve been dreaming of again: having drinks with friends, going on fun day trips, enjoying a walk on the beach or simply cycling your kids to school.

But even though you’ve come a long way health-wise, you’re still not completely ‘there’ yet. Your aching back still keeps you up at night after sitting on a bar stool all evening. A day out does give you serious headaches, whole-body pain or fatigue afterwards. You still have health setbacks each time you catch a cold or virus, with symptoms popping back up unexpectedly. And as much as you love those nature walks, you can still only stroll so far – on easy terrain – before needing a break.

Now of course, you’re oh so happy that you’re able to function somewhat normally again. But this is exactly the problem that high-functioning spoonies encounter: seriously ill people (understandably!) may feel that you should be grateful for your improved condition. You shouldn’t complain, because they could only dream of doing the things you do.

At the same time, to healthy people, there doesn’t seem to be much wrong with you – the whole “but you don’t look sick” thing – so they expect you to function like they do. It’s much harder to understand for everyone around you that you still need to pace your energy and manage your remaining symptoms, or that you do require some adaptations, aids and support.

As a high-functioning spoonie, you can be faced with expectations that you cannot fulfill, while at the same time not always getting sympathy from the people who do understand what it feels like to be sick.

In that gray area of not being seriously sick but not being fully healthy either, you can feel a little lost. 

Aside from feeling unsure about who you are now your health has changed and where you fit in, there are all kinds of practical problems you may encounter as a high-functioning spoonie.

Maybe you no longer qualify for financial support or practical help, but juggling a job, housekeeping and family life is still (too) demanding. Maybe you’ve returned to the work force, but you struggle with low energy, poor attention span and flare-up days. Perhaps you still have regular doctor’s appointments or therapy sessions, or you need to stick to a special diet to stay healthy –  all of which require time and energy on top of the normal tasks you have to do. It may feel like you carry the work loads of both a sick and a healthy person.

Even when your worst symptoms have disappeared and your strength and fitness are slowly returning, you may still have to work around limitations like impaired mobility, being prone to sensory overload and mental fatigue.

And despite living a much healthier and happier life now, that feeling of unfulfilled potential can still creep up on you – knowing you could do and be so much more, achieve meaningful goals and make your dreams come true, if only your body and brains would fully cooperate.

The reverse can also be true: you know how far you’ve come and how hard you worked on your recovery, yet people only notice the things you cannot do yet. “Oh, you can’t drive/work full-time/exercise?” Having to say “no” to social gatherings, helping out in your kids’ school or other commitments can make you feel like you’re still not enough.

Not everyone will encounter these problems as they get better, and surely not all of them all at once. Most of the time, high-functioning spoonies will feel very grateful for their health improvements, and they certainly wouldn’t want to go back in time or trade places with those who are housebound or stuck in bed most of the time.

But that doesn’t mean there aren’t still hard moments and obstacles to overcome, and those struggles deserve to be acknowledged and addressed too.

I’m curious, if you’re a high-functioning spoonie, do you ever encounter any practical or emotional problems living in between sickness and health? 

Check out why I think you should create your own definition of recovery and tips to work on your recovery when you can’t pause your everyday life.