When Feeling Better Isn't Everything You Dreamed It Would Be


Eleven years is a long time. Especially in the space between 12 and 23. I spent those years mostly alone in my living room, doing school work from the couch and forming alarmingly deep attachments to TV shows. You see, when I was 12 I got an infection, and thanks to some genetic stuff and a faulty immune system, I couldn’t recover. I developed chronic fatigue syndrome. Everything made me tired. I’d turn gray and then red and then gray again walking around the block. School was impossible. So at 12 and three quarters, my decade-long stint as a fairy-tale princess locked in a tower began.

We all have towers — things that lock us in and keep us away from what we want, from what’s outside, from life. For some of us, that tower is anxiety or depression, or limited mobility. For some of us, the tower is an inconvenience. For others — for me — the tower is everything.

Of course, at 12 or 13, I didn’t know I was in a tower, and I certainly didn’t know I’d be there so long. I remember hitting the two-year mark and thinking, “Dang. That’s a long time to be sick.” But I tried to make the most of my time in the living room. I read a lot. I wrote a lot. I finished 7th through 12th grades with one hour of tutoring a day and no actual math teachers. (It shows.) I daydreamed about what I would be like when I got better and I had enough energy to get dressed every morning and leave the house. I wanted to be a Marine, study at Oxford, become a doctor and join Doctors without Borders, and have 13 children. Classic over-compensation. I made a list of things I wanted to do by the time I was 21. But eventually I gave up on those dreams and that list. Eventually, I realized that my tower might be permanent.

Senior year of high school, the year I subconsciously thought would free me from my tower, came and went and I was still sick on the couch. That’s when I got real with myself. “You are not Rapunzel. This is not a tower. You are sick. This is your life. This is it.” Seems harsh, but it did help a bit. I started thinking in terms of permanent disability. It was liberating in one way. I wasn’t waiting for my hypothetical life anymore. That life outside the tower, my daydream healthy life, was not a possibility. Life is not a fairy-tale. I am not a TV character. So I needed to plan accordingly. And I did. And I tried to be happy about it.

But something very  fairy-tale happened around the new year 2015. I got into the college of my (more attainable) dreams as a 23-year-old junior. I got to live away from home — leave the living room! — thanks to some incredibly generous friends. It was my 11th year of chronic illness and I had learned to manage enough to go to a university.

I was drained at first, but then, slowly and even more plot-twisty, I realized I didn’t feel like I needed to sink into bed for 16 hours after one hour of class. I didn’t feel like I was moving through waist-high water when I walked. I didn’t feel like I was wearing a weighted suit.

I felt… better.

You have to understand what that meant for me. After 10 years of always feeling the same and a year of feeling a little bit worse than the same, I felt better. I could walk around the block. I could run half the block.

I was Rapunzel coming out of her tower. And it was amazing. And it was awful.

Now that I felt a little bit better, all that acceptance I had worked so hard to pretend I had was history. I wanted more. I was two years late on my “21 by 21” list and it was burning a bitter hole through my notebook. But I had no idea what I was doing. How do people live outside of living rooms and TV? How does one “go out” when one still technically spends 14 hours a day in bed and that’s a vast improvement? How does making friends work?

I felt like Brendan Fraser’s character in “Blast from the Past,” only less charming and without an Alicia Silverstone to guide me. I burst into tears at a stop sign once because I overheard the girls crossing the street chatting about their plans for the evening. They had purpose and places to be and people to see. And I counted going to two classes in the same day as an accomplishment.

So I felt better but also a lot worse. For the first time, I genuinely hated my life. I was insecure about myself. Disappointment and frustration overshadowed the happiness I always thought I would feel. I knew how to exist in the tower; I knew how to daydream. I didn’t know how to be in the real world. I didn’t know how to be “normal.”

Rapunzel would be so weird when she stepped out of that tower, guys. So weird. And the world would be overwhelming. She would need an adjustment period. And probably some therapy, because being stuck in a tower is an awful thing. Even fairy-tale characters don’t come out of that normal.

When I talk to someone else about their tower, the thing that cuts them off and keeps them apart from everyone else, I don’t walk away from them thinking, “Damn. I can’t handle that weird.” I see them differently. I see their weird. But it’s like they stand out more. I can see them better. And I can see me better and my weird doesn’t feel so bad and my tower doesn’t feel so tall. Our towers get smaller when we talk about them. That’s why I’m writing this.

It’s been more than a year since my symptoms of chronic fatigue syndrome started to improve. I’m still weird. I still feel frustrated. I’m still not as charming as Brendan Fraser and I don’t think I ever will be. But even though I’m not “normal,” and I’m not all the way healthy, and I’m on my sixth year of undergrad, and I’m still figuring out ways to get out of the house, and I still sleep 10 hours most nights… my tower keeps getting smaller.

I am not Rapunzel. I am me and I feel better. I walk for fun. I run for fun. I have plans tomorrow evening. I may have finished my “21 by 21” list but I don’t know because I lost it because I don’t need a list. I don’t need to be normal. I still don’t know what I’m doing, but that’s OK. I’m (mostly) out of the tower and I’m living my outside-of-normal life.


Find this story helpful? Share it with someone you care about.


Related to Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

woman resting head on arm

Why I Think 'Chronic Fatigue Syndrome' Is the Worst Name Ever

Imagine the following conversation… Friend: Heard you weren’t feeling well lately? Me: You could say that. Friend: So you’re just tired all the time? Me: Yeah, and a few other things… Friend: Girl, I hear ya. When I got back from Hawaii in January, it took me a week to turn around and then I made [...]
Young woman looking through the window

4 Downsides (and Bright Sides) of My Illness

As you may be aware, living with a debilitating chronic illness is no fun: the challenges thrown at you by a disease which dictates your every move can be overwhelming. But today, I’m choosing to celebrate the bright side. By putting a positive spin on some of my worst experiences of living with chronic fatigue [...]
wheelchair sitting outside house

What I Need People to Understand About Severe Chronic Fatigue Syndrome

“Oh, so you have chronic fatigue syndrome (CFS). I know plenty of people with CFS. They can work part time, and need a rest now and then, but they really try to live life to the fullest.” The lady in the shop smiles knowingly at me. My throat begins to choke up. This is not [...]
beer glasses on table surrounded by friends

When I'm Pressured to Drink Even Though My Illness Means I Can't

“Go on, have a drink — you know you want to.” Who of us with chronic illnesses hasn’t heard these words on the rare occasion we get to attend some sort of celebration? For some of us, the answer has to be, “No, thank you.” But it doesn’t stop there. When I was younger I could [...]