Once upon a time there lived a very beautiful princess, and the way you could tell she was beautiful was that she knew it. She didn’t bother with big puffy dresses, or make up—she was beautiful on a tyre swing out in the woods of her poor little kingdom, and she was beautiful fixing a car covered in mud. She knew there was no point trying to look beautiful for anyone. But what the princess didn’t know was that she was under a curse. Her parents did, but how could they tell her? She looked so happy as she was, awake and outside.
You see, when the princess was born, a terrible thing happened. Her parents invited fairies to the naming ceremony, which is a bad idea at the best of times because fairies have awful taste in names. But this time it was terrible because one invitation didn’t reach its fairy owner in time, and she was the type to hold a grudge. “When she is 16,” the fairy had said, storming into the castle with a face like the plague, “Your daughter will experience a normal illness. You won’t think anything of it and neither will she. But she’ll never get better. She’ll spend the rest of her life in bed. She will fall into a deep sleep just like in a fairytale, only she’ll still be awake to suffer. Thus speaks the fairy.”
So the princess grew and learned to scrump for apples and look after a dog and identity every plant in a field. She lived her world outside and her parents let her because they knew she only had a little while left to spend on it. They did everything they could think of to keep her safe and healthy, hoping that good diet or exercise could stave off the fairy’s curse. And at last came the princess’s sixteenth birthday, the day both of them had been dreading all those years. She had insisted on taking a trip to a neighbouring kingdom, her first opportunity to explore the world as a young adult, and she was coming home today. They’d tried to stop her, but how could they? She wanted to see the world so badly. What if she never got to again?
And as the car rolled up, gleaming because the princess maintained it herself, they knew their fears were right. The princess wasn’t at the wheel—she was slumped in the back of the car, panting, eyes fluttering shut, barely able to move. The driver filled her parents in. She had come down with an illness on her trip, but it was only a very mild one. She should be better by now, but instead she could barely sit up. It was very strange, he said, but he was sure she would be fine. People didn’t just get sick like this, he said, and a note of judgement entered his voice.
They took the princess to bed and laid her on the sheets, but she didn’t get better that month, or the next one. She howled in pain when the guards in armour clanked past her door, and every day when the servants opened the shutters she’d sob for them to be closed again. Eventually they moved her to a spot in the highest tower, far away from everyone, so her bruised senses could heal. Her parents did everything they could think of, but they were doing it uphill. The royal doctors insisted it was all in her head and a good romp in the countryside was all she needed. The staff harassed her to get up and walk, because a rumour had got around that that would cure her. The bright smile that was the pride of her face had long since faded. Now she wore the mark of pain. She stopped speaking altogether, signalling for what she needed in weak hand gestures. Her parents stood at her door and sobbed for the person they once knew. Then they left, quietly, for fear of hurting her more.
After some months, her mother went in secret to the fairy country to beg for her daughter’s life. It was as if everything in her room stood still now—dust motes hung sleepily in the air, and even the tower mice were found dozing in their holes. A year into this situation now, vines and brambles had begun to grow around the bed. They crept up the wall and tucked themselves into every crevice. In that silent, unmoving room, they looked more threatening than lush and green: it was as if the world was trying to swallow what was left of the princess whole. So her mother set out, without her father’s knowledge, and pled at the gates of the fairy kingdom for her daughter’s life. The fairy with a grudge didn’t appear, but she could hear the silvery peals of laughter. “She’ll never be well”, they said, “until everyone in your cash-strapped little kingdom believes her. And nobody will believe her when she’s too sick to speak. You’ll have a plant for a daughter until the day you die. Ha-ha!”
The mother left in tears, cut and whipped to the quick by the magnitude of the task and the bitterness of the world. But she knew the fairy had said too much, and she left weeping but with fists clenched. She was ready.
She tried proclamations first, town criers announcing to all that the princess was sick and not just sulking. These didn’t do very much, all they did was make people who hadn’t known anything think that the princess was, in fact, just sulking. Then she tried grand entertainments with stories of brave heroes falling ill against their wills, always with a meaningful look to her own small hero shut up in the tower. She tried going to the royal doctors and telling them the truth behind the princess’s ailment, asking for their help to fight the fairy. And sometimes these things worked for a day or two. Sometimes compassion entered their eyes, just for a little while. But the fairy magic was strong, and sooner or later doubt nibbled its way back into their hearts, and she’d catch the servants gossiping “…all in her head, they say. I know, I used to like her too, it’s a shame. We still have to work, don’t we? Just wish she’d get over herself and get up.”
Meanwhile, her father was researching ways to undo the curse without fulfilling the fairy’s prophecy. But this illness was like nothing he’d seen before. His daughter was clearly sick, but all the magical tests in the world told him that nothing was wrong. He plugged away night after night, losing himself in the intricacies of her condition, while his queen tried to persuade a suspicious populace that their princess could get better, if only they Believed. Years passed, years of tears and anger and disillusionment on the outside but on the inside, in the hidden room where the princess lived, there was only a choking, leafy sleep.
I know you know the original version of this story. A Prince comes and wakes her with a magical kiss. But this story isn’t quite so simple, and it will take more than one moment of commitment to her health to make her better. Princes have come and tried, of course. Her parents banned the kissing on grounds of consent, but they came anyway, hoping to win the hand of the mysterious sleeping girl. They left when they realised she wasn’t getting magically better, that if they wanted to marry her they’d have to accept she was sick. Eventually her parents started sending them away the second they arrived at the castle gates. If you can’t believe her, they’d say, get out of our kingdom. We have enough people to convince.
And that’s how the story ends, I’m afraid. With the work still left unfinished. I could write a nicer ending; I could tell you the Queen went to every house in the kingdom and taught them to Believe until the spell was lifted and the Princess woke from her bed laughing. I could tell you the King researched his daughter out of the worst curse he’d ever seen, without any money or anyone else’s help. I could write you a prince who loved the princess so much he was prepared to support her until she was well. But these things don’t happen much in the real world, and they’re not going to happen here. Lots of people will believe the Queen, but lots of people won’t. There will always be someone writing to her recommending psychological theories or magical interventions. There will always be a new skeptic who will look at a suffering person like the princess and see someone who isn’t trying very hard. As for the research, the King will never solve things on his own. He needs support and money and the expertise of others, and, until he gets them, he will only ever be doing what little he can. And the princes—we can forget about the princes. They think all the princess needs is to be saved. Deep in her green, leafy prison, surrounded by a cohort of dozing creatures, she knows she just needs to be seen and to be loved.
But at least I can give you an epilogue with a little bit of hope. Because if, after too many years of pontificating and denial, the community comes together to save her, the good news is the princess can still be saved. She could be well tomorrow, it turns out, if only the work was done. The kingdom is a little backwards, perhaps. But we can make it less backwards together. Because there are princesses trapped in towers across this planet—and princes and gender-neutral royalty too—and if we come together we have the power to save them. This isn’t a fairy curse. It’s something we can look in the face. You can help end this suffering, you can hack the vines that trap us in our beds away. You can join the fight to free us from our towers. And it’s as easy as a kiss in a fairytale. All you have to do is see us. All you have to do is Believe.
Because here’s how the story ends if you don’t. The vines keep growing. The sleep keeps spreading. The princess becomes a ball of thoughts choked round by leaves and flowers. First she cannot speak, then she cannot eat. The fairy curse takes her, body and soul. And one day her parents walk in the door, tiptoeing to spare her the pain of their footsteps, and they can’t find a trace of her left. Not the person she used to be. Not the person she could have become. Just a plant, waiting to be watered. Something with no belief or hope left at all.
And we need princesses more than we need plants, at least in this metaphor. We need belief more than we need grief, need each other more than we need to be alone. When we get trapped in towers, we don’t need flowers. We need love and dedication. We need people like that king and queen, the kind of people who will unpick those vines from around our necks for as long as it takes, until we are free. People who will put their foot in the door wherever they go and say, “Hey. People are hurting. You need to know.” That’s how this story ends, if you want it to end. With all of us ending it together. That’s how we get better. That’s how we wake up from a hundred years’ sleep and start being who we could be.
Sarah Stanton is a disabled writer and ME/CFSer living in (one room) in San Francisco. You can find her on social media @theduckopera and celebrating life from her bed at sharemywonder.com.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the