It hit me the other day as we were speaking with a therapist, that the outside world has absolutely no idea what it's like to be chronically ill. She was advising us as we were getting ready to navigate a 504 planning meeting and what she was saying made total sense.
“No one can truly understand what your days are like,” she said to Rosie. “You need to break it down for them as simply as you can. Tell them what it's like to have a headache 100% of the time. Describe that it's hard to get out of bed.”
When you live with invisible illness, it's impossible for the majority of the world to really truly grasp the daily struggle. If you can't see a physical illness, it's just not there. Unfortunately, for patients that struggle with Lyme Disease, Rheumatoid Arthritis or Chronic Migraines, the struggle and the illness are real and it's hard to tell people what it's like because they just don't get it.
When I first started writing about invisible illness, I turned to my friend Google for resources. I stumbled across a beautifully written piece from Christine Miserandino called the Spoon Theory. She wrote it as she worked through the struggle of describing to her best friend what it's like to have Lupus. It's a perfect piece to describe what it's like to have any illness or disability and I think it's a must read if you have someone in your life that is chronically ill (and even if you don't, it's a must read so you can learn to empathize with others).
The Spoon Theory simply states that if you're ill or disabled, you only have a certain amount of spoons to get through the day. Every single thing that you do from getting out of bed, to getting dressed and leaving the house, may take a spoon. Since you only have so many, chronically ill people have to manage their spoons (i.e. time and energy ) to make sure that they have enough spoons to get through the day. And, they have to be sure that they don't completely run out and borrow from tomorrow's spoons and start out with a deficit.
To a healthy person, this may not make a lot of sense. We don't have to worry about running out of spoons, we have an unlimited amount. When we get up in the morning, we don't have to worry about running out of energy before noon or having a sudden migraine. If we over do it one day, we may be tired the next but not incapacitated. We never have to worry about saving our spoons. Ever. However, if you have a chronic illness, it's a constant battle.
On the days when Rosie feels great, it's such a treat to see her interact with friends, try to dance and have a full day. Unfortunately, the next day, she may feel absolutely terrible and not be able to get out of bed. That's life with POTS. You have one great day then a terrible one the next. It stinks. You are always borrowing from the next day's spoons. Throw an unexpected migraine in the mix or a day when we're vomiting blood and you've messed with an entire week of spoons.
It's so hard for a teenager to understand on a good day why she can't push herself. We had a day like that this weekend. Sunday wound up to be the only day that Rosie felt amazing and as she was finally able to get out of bed last night she said, “I think I overdid it.” She gets the reality of spoon theory, she just doesn't want to.
Finding balance when you have a chronic illness is difficult. On the good days, you want to live like everyone else and it's often not possible. On the bad days, you just want to curl up in a ball under the sheets and hope it goes away. It's hard to find the happy medium so there are more good days than bad but we're getting there. We just need to integrate the Spoon Theory into our daily conversations to figure out where we're at during the day.