Why Living With Chronic Illness Is Like Playing a Video Game Stuck on Expert Level

Imagine you’ve been playing a very detailed, realistic video game for months. You are playing as a character you enjoy, one which you were given, but which you’ve shaped through your actions in the game. Your character has met people and made choices in the game that they’ve gained experience points from, as well as moved up in the world of the game, possibly to a position of some acclaim – or at least on the verge of such a position. You’ve faced increasingly more difficult and complex enemies and situations, and you’ve become stronger and wiser for it. Although you still experience setbacks from time to time, you’re generally much better equipped to meet each situation now than you were in the beginning of the game. You’re looking forward to seeing how some of the storylines you’re invested in, both with your character and others, are going to play out.

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

The next time you log in to play, your save files are gone.

Your character is deleted.

Your progress is lost.

You frantically search for ways to restore your saved game. Online, you find more ideas than you can ever possibly follow up on, but you pick the top several and try them all. This takes time, but it seems worth it. If you can get the saved game back, all your progress, and your character, it will be worth it. It will be worth it to not have to start over.

Nothing works. Some things look like they’re working at first, only to fall through.

What will you do? Sure, you can quit the game. Maybe you do, for a while. But you love the game, and you can’t imagine your life without it.

So you start a new game file, with a new character.

For some reason, the game is stuck on expert level. You’ve played at normal, sometimes even novice, but never expert. The game is stuck.

You start over anyway. You notice that even the tutorial process in the beginning is taking you a long time, though it’s designed to be easy and guiding, to help you build a sense of competence. It must be the difficulty level, making things you know to be easy seem much harder. Still, you wonder, “Have I just gotten worse at the game? Maybe I’m just not trying as hard as I was before?”

You encounter small challenges at the beginning of the game that you know you’ve dealt with in the past, as the character you were playing before, but they’re different this time. The same things need to be resolved, but your character isn’t equipped with skills or items like your last one was. You find yourself failing at challenges more often, dying, having to try again, or avoid that challenge altogether for the time being, hoping to come back to it later, unsure if you will ever be able to. In the last game, you knew that you’d eventually be able to come back and win. This time, you’re not nearly as sure.

You meet a character that you traveled with last game, that knew you, that you depended on and liked, and you find that person to be lacking in skills you now need to make the journey. Last game, you were strong, with a lot of endurance. You needed someone interesting to keep the mood light and fun. You now have to decide who to keep company with based on different factors because your character is different, with different needs and strengths. Your character is no longer strong or capable of enduring for long periods of time. You now need someone to carry stuff for you, and this person can’t help you anymore. You’re sad you will miss out in their company, but you also know it won’t be helpful for you to travel with them.

You seek out and find others who have what you’re looking for, some who even have specific tips on how to play on expert level. Even if you’d met these people in your last game, you might not have seen the value in what they were offering. Now, you do. You find that some of the companions you enjoyed in the previous game are still enjoyable, while others that you would have likely hated, chafed at, are now much more useful to you, and you see their value in a new light.

Sometimes you find yourself playing your new character like your old one. You pick up everything in sight, to sell later, only to realize that you can’t carry it all and that the effort is draining your energy. You can’t rely on selling stuff anymore, not in the way you did. You can focus on only picking up more valuable things, or you can find another way to earn income, but you know you can’t do it the way you did before. You now have to be more creative.

You come across bosses that you’ve battled before, and in some ways your knowledge and experience are helpful to you – and in other ways, they’re totally irrelevant to the current situation. Sure, you memorized the combat patterns and learned how to defend yourself in the last game, but on expert level, the boss is faster, meaner, and you have fewer opportunities to duck.

You find you are continually having to update the information you carry in your head about how to operate in this game’s world because, though the world hasn’t changed, you and your abilities have. It’s disheartening, and still you find yourself sometimes looking for ways to restore your old character and saved game file. You can see the value of the expanded knowledge you’ve gained, playing this game in two such different ways, creating relationships you wouldn’t have had, focusing on skills you wouldn’t have in the past – but you also wish you could just play the way you did before, with your old character, and have fun like you used to.

Let’s unpack the metaphor.

If life is like a game we’re all playing, then acquiring a chronic illness is like having your saved game file corrupted, deleted, and placed on a much higher difficulty setting. Sure, you’ve been through some of the challenges of the game before with your old character, such as graduating school, making close friends, maybe even finding and working in a career. You’ve navigated the challenges of life to the best of your ability and succeeded well at some of them. You’re hopeful for what else you can accomplish.

Then, suddenly or gradually, you are forced to re-navigate all of those things you thought were settled. You look for solutions and ways to restore yourself to the you that you remember, but nothing sticks. You may have to give up your career entirely or find a way to refocus on something else in your field. The plans that you had for your future, that seemed doable and desirable, no longer seem realistic, and you need to come up with new goals and plans that are. Relationships that worked when you were more capable don’t always work with the new character, and those must be grieved.

You have to decide whether to and how to even engage with the world anymore. For example, whether to play the game, or let it collect dust. In this process, you find yourself wondering if you’re making things harder than they have to be – and how much of your problems you’re actually causing.

You can’t help but find yourself comparing what it was like to navigate these situations in the past, marveling over how easy they would have been, contrasting with how hard they are now. And because you only partially completed the game, or partially went through your life stages, there are new challenges that you hadn’t yet faced (like reproduction) that you never got a chance to navigate while you were well. You find yourself wondering how you would have been, grieving over your old character never getting the chance to shine in these settings.

You are continually updating your decades-long experience and knowledge log to more accurately reflect your present reality. This is as much a process of grief as it is of survival, because you know you can’t operate like your old character did, but you wish sometimes dearly that you could. You may even recognize some of the strengths that you’ve developed as a result of chronic illness, traits and relationships that you wouldn’t have if you hadn’t gotten sick. These things are sometimes enough to make you thankful for the whole ordeal, but frequently they’re just sad reminders of the ways in which you have to cope now.

I hope this metaphor for what it’s like to navigate acquired chronic illness through the lens of playing a video game results in someone feeling less alone in their illness experience, either through recognizing themselves, or through helping an ally understand what acquiring chronic illness is like.

Getty Image by MatiasEnElMundo