Why Chronic Illness Feels Like a Ball and Chain Shackled to My Ankle

Picture this: You wake up one morning and put you feet on the floor. Suddenly you look down and see that a ball and chain have been shackled around an ankle. For the sake of this exercise, we’ll pretend this isn’t too far out of the realm of comfort and you do not need to search the house for burglars. So, you get up and brush your teeth, shower, eat, whatever your morning routine is.

By the time you head to work you are already noticing the pain from dragging this shackle around, but there isn’t anything you can do about it, so you just keep going. At work, coworkers notice your ball and chain immediately and ask if they can help. Your mother wants to take it from you and wear it herself. Your friends want to just lift it for a while to give you a break. But those aren’t options because this shackle has been given to you, and only you.

You make it through your day the best you can and by the time five o’clock rolls around, you can’t wait to get home and massage your poor aching leg and back, since the pain has creeped farther up your body. Maybe even take a nice hot bath.

But, you get home, and everything still needs to be taken care of. Bills still need to be paid, children need fed and be helped with homework, housework and animals need tended to, spouses still need to communicate. That’s when you say, “I’ve really done all I can do today and I need to go lie down.” That’s the moment the ball and chain wins for the day.

Now imagine that this is your day every single day of your life.

The ball and chain you wake up with each morning may vary in size, but it is always present. There are days when the shackle won’t allow you to get out of bed and other times you can manage to work and still live life with relatively little thought given to your companion of iron.

The coworkers that were so alarmed and willing to help out in the beginning are now just getting frustrated that you still aren’t rid of the thing and they’re resenting the fact that your work may be slower. Your friends have dwindled to just a few when the others got fed up with your last minute cancellations and the ones that remain are generally supportive, but without dragging your chain, no one else can truly understand. Your family is frustrated because they want the person you used to be back.

You now feel like a huge burden to everyone around you. You feel guilty for needing help, guilty for being this person with this shackle, guilty that you haven’t been able to reach the goals you set out for yourself…And for being financially dependent on someone else because that job of yours just became too much to handle. The ball and chain just got too heavy to heave all the way to the office, deal with it all day, and then drag it back home.

Well-meaning strangers may even ask you if you’ve tried things, like a drill or screwdriver, to remove the chain.

Now imagine that ball and chain is invisible.

To everyone else you look totally healthy. You are the same person as before and are expected to perform as such. Reaching understanding from those you come into contact with is difficult because the only thing they have to go on is your word. They may say you don’t look like someone with an invisible ball and chain. Or that it must be something you’re doing because invisible shackles don’t exist.

They may say that its in your mind and a good attitude is all you need. They may tell you that you can heal your body by going vegan, paleo or gluten free and and the list goes on and on. Doctors may say, “Hm. Yes, it looks like you might have an invisible ball and chain, but its not one I’ve seen before. You’ll need a shackle specialist.”

Then, the specialist may say, “I have no idea how that got there, but have you tried gaining/losing weight?”

You might hear lots of stories of someone who knows someone who had a second cousin with a similar thing and how she cured herself with rainbows and butterflies.

You might think that once you have a name for the chain, things will improve. Perhaps things do get better in some ways but worse in others. Your doctor may tell you, “I can’t remove the shackle but I can try to make it bearable for you. Oh, and I can’t treat the pain because it’s a chronic condition and you’ll become an addict. However, we can try to make more days small shackle days so you can live more of a life.”

You might hear people tell you that your particular ball and chain doesn’t really exist and that its something people say to get attention. A name does, however, help guide the weight shrinking protocol and helps you find people going through the same thing.

Some years later you may look to the past and wonder how in the world your life got to this point since that dreadful morning when you put your feet on the floor and noticed the shackle for the first time. You look down and your constant companion is still there. Still dragging you down, stealing your energy, your job, your social life, your friends, your independence… And you realize that this is as good as it gets. There is not magic spell to cast away your ball and chain. It is here to stay and you just have to learn to live the best life you can while dragging it around. Everything is hard. Everything takes ten times more effort than it should. Everything is exhausting, but you put your feet on the floor the next morning and you get out of bed. You face another day.

This is what it feels like to have an invisible illness. Unless you’ve lived it, there is no way to understand the fatigue that comes along with chronic pain. The depression and grief of losing not only friends and family relationships, but also the person you were before. The isolation of trying to give yourself time to rest. The brain fog that comes along with the pain and from the treatments.

There is no way to comprehend that, while nothing has changed much on the outside, your heart has been broken hundreds of times from disappointment of failed treatments, letting friends down, letting family down…All the while wondering if it is your fault.

The anxiety of wondering how on earth you’re going to support yourself financially or if your doctor will believe you about your burden. There are countless symptoms of chronic illnesses that span across the board – not just pain. It’s a club you can’t be in until you’re shackled, and once you’re in, you can’t get out. I hope this can help bridge the communication gap between those in the club and those standing outside of it.

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Thinkstock Image By: retrorocket