Live Through This

A Mind of My Own

Coming out of my five-year break from the whole entire world.

Illustration by Minna

Illustration by Minna

Sometimes I like to pretend that certain things didn’t happen. There are parts of my personal history that drag behind me like a tail I wish I could cut off. Things I would rather hide than explain.

Recently, my mum stumbled over some old school reports, and I noticed how, for the first two years of secondary school, they were completely unblemished, free of anything other than what you would expect of an 11- and 12-year-old girl. I was a student with “lots of potential” and “a bright future.” I was on track to a normal adolescence, ready to hit milestones and embrace my independence, just like everyone around me. Leafing through these reports at the dinner table, I wondered aloud, “Why did everything have to fuck up?” My mum replied, “You got ill, darling.”

During the winter of my 14th year, I was knocked down by a bad case of the flu, and I found it hard to get up again. The worst part of the infection was over by Christmas, but a constant fatigue and anxiety lingered into the new year. At first I didn’t even mind—since I clearly wasn’t well enough to go to school, I was relieved of a whole pile of obligation and responsibility. But as the weeks went by and I didn’t feel any better, I became uneasy. How was I going to return to school and carry on with my education if I was too exhausted to get through a seven-hour day?

By spring I felt strong enough to go back, but sure enough, I couldn’t make it through a whole day. I would sit through a couple of lessons before going home and being exhausted for the remainder of the day. My breath would shorten every morning before leaving the house just in anticipation of school. This wasn’t my first experience with anxiety: when I was eight or nine, I remember feeling a strange disconnection from time to time, mostly whenever I found myself in unfamiliar places or situations. But it wasn’t until after my bout with the flu that I became fully and constantly aware of it. The anxiety had become general and inescapable.

After a few hospital appointments and blood tests to rule out illnesses like diabetes, I was diagnosed with myalgic encephalomyelitis (ME), an acquired neurological disorder whose symptoms include exhaustion and sleeplessness. It’s also often referred to as chronic fatigue syndrome (though there is some debate about whether they are indeed the same illness). Putting a name to it helped me at first—it gave me something to offer the school as proof that I wasn’t slacking off. I was put on a reduced schedule and went to school about three days a week. That summer, I started therapy, which I would continue for the next two years.

Soon, though, my health issues overshadowed everything. By demanding the majority of my time and energy, they slammed the brakes on my entire life. I retreated further and further from the world, until I felt like I had disappeared. And I think part of me wanted that. My previous existence—walking to school, seeing friends on the weekend, acting in the school play—had become too much for me to deal with; it was easier to avoid these activities altogether. Being in and out of school sporadically made it almost impossible to maintain a social life of any kind: I went from mingling with my schoolmates on a regular basis to chatting only briefly in class before being told by teachers to concentrate. I held on to a few important friends, but I wasn’t part of any tight-knit groups. As I ceased to be around as much, the invitations to hang out on Friday or celebrate birthdays grew infrequent, and even when I was asked out, I felt so inadequate compared with everyone else with their functional lives that I couldn’t bring myself to go. I didn’t feel like I belonged. I didn’t feel like I could talk to people, because I had nothing to offer them. I also couldn’t cope with the idea that all my friends were moving forward with their lives without me. I felt like a huge chunk of me was missing while they were still whole. So I got used to being alone.

I hit my lowest point in the summer of 2011, three years after my initial diagnosis. By that time, I had hardly any contact with the outside world. In England, you can leave school when you’re 16, and though that wasn’t my original plan, I ended up doing so for a year. I was forced to change therapists just as we were about to consider prescription medication to help with my moods (which I never ended up taking). I fell into a deep depression that lasted a few months. I couldn’t muster the energy to leave my bed, never mind the house. Even simple things like watching a film would leave me devastatingly tired. I attempted to go for walks, but I could only get so far before my body weighed me down like lead. Everything—getting dressed, eating, bathing—took a superhuman amount of energy. It was all too much for me too handle.

I can’t really express the isolation I felt during this time. The goings-on of my friends—spending warm days in the park or hanging out at people’s houses—seemed extremely far away, as if I were trapped behind a frosty pane of glass. I would catch glimpses of them on Facebook, smiling for the camera, and this average teenage life looked like a fantasy to me; reality was being stuck in a sadness that kept me in bed all day. What made it worse was that even if I had felt capable of reaching out, none of them would ever understand what I was going through. That and everything—everything made it worse.

That was almost two years ago. In retrospect, I think I had to get to that low point to realize what I wanted. It took my being almost sick to death of my limitations to gather the strength I needed to navigate my way back to a place where I could actually live, rather than just exist. In September, after five years of isolation from the rest of the world, I finally returned to school full-time so I can fulfill my dream of going to university next year. Compared with the years I spent at home, doing nothing but wrestling with my own thoughts, the past six months have been pretty intense. I consider every week of school that I get through a massive achievement.

It’s also been weird to re-enter the adolescent existence I had so long avoided. While I was wallowing in illness, isolation, and confusion, most of my peers were going out, making friends, dating, and drinking (the legal age is 18 here)—all of which I had almost no experience with. I had barely been kissed, I had never been drunk, I had never had girlfriends with whom I could get drunk and gossip about kissing. And when I think of this, my first reaction is acute embarrassment—I was, and am, ashamed of my innocence. I didn’t choose it. It isn’t who I truly am or who I want to be. So I adopted the mantra “Fake it till you make it.” When I went out and ordered my first legal alcoholic beverage—a cocktail, I think—I didn’t make a big thing about it. I pretended it was totally normal, and I didn’t let anyone know that I was ticking a first off my list.

Now those firsts are stacking up. I’m having people over my house, I’m going shopping and to the cinema, and I’m meeting boys. I relish all of it, even though I often feel like I should have been doing these things a long time ago. Then again, I remind myself, I have had to mature a great deal in a very short amount of time. I have dealt with things that most teenagers will never have to, and I now know more about the whims of the human mind than my friends, with any luck, ever will.

I still have to sometimes say no to going out because I’m too anxious, and I still have to take a day off school when my mood becomes uncontrollable, but I am recovering from a huge blow. If you had been knocked down by a truck and so many bones were broken, you would be careful not to rush out and test those bones too soon. In some ways, I’m still in plaster. Things that come to others very easily are hard for me. I can be having the most fun in the world at my favorite pub with all my friends and I’ll suddenly feel out of place all over again when they start talking about sex or doing drugs or going out to clubs. It can feel like I am still in a race in which everyone else got a head start. That feeling of inadequacy creeps up on me, and I start to detach again.

I feel a sense of loss over not getting to experience adolescence the way it was meant to be experienced. I feel like I wasted years of my life. But I couldn’t have done anything differently. I had no choice. Sometimes it’s hard to accept this, but deep down I know it’s true. This is the only life I’ve got. And one day it will stop weighing me down; it will carry me where I want to go. ♦

31 Comments

  • soviet_kitsch April 8th, 2013 7:45 PM

    i’m crying. this hit so, so, so close to home.

  • Gabby April 8th, 2013 8:33 PM

    <3 <3 <3

  • maxrey April 8th, 2013 8:34 PM

    THANK YOU. I so needed this today. xo

  • abby111039 April 8th, 2013 8:38 PM

    I almost cried, because this is basically my life right now. Thank you SO MUCH for sharing this with us. Truly, it was beautiful. <3

  • Tourdivoire April 8th, 2013 9:00 PM

    Wow Naomi, thank you for sharing your story. This is so full of wisdom. Your diary entries are one of my favourite things on Rookie, they have made me think so much.

  • MaggieMae April 8th, 2013 10:53 PM

    You show such strength and bravery in sharing this story. Thank you, from me and everyone else whose heart you touched with this article. Keep on keeping strong girl

  • lucianneds April 8th, 2013 11:04 PM

    this is absolutely everything i needed to read. it’s comforting to know about someone who experienced something so close to what i’m still going through… the anxiety, this feeling of detachment from everything… thanks for sharing this, naomi!

  • The_Idler_Wheel April 9th, 2013 12:02 AM

    I feel like this was written for me! I can relate to it a lot–I had mono last year and missed most of the school year. Losing my social life and any sort of fun left me lonely and eventually got depressed and suffered anxiety. When it ended, I knew I wanted to change things, so I auditioned for the writing program at a huge arts school for my high school years, and I got in. Now that I’m better, I’ve made peace with all the “time I wasted”. I was sick, after all! Lovely as always Rookie <3

  • Dylan April 9th, 2013 12:41 AM

    I luv u

  • Blythe April 9th, 2013 1:16 AM

    I have dysautonomia, specifically Postural Orthostatic Tachycardia Syndrome, which is a close cousin of CFS/ME. In other words: I FEEL U GURL.
    Also, are you familiar with the Spoon Theory? I highly recommend looking it up.

    • Jeannie M April 9th, 2013 2:34 PM

      I’ve had dysautonomia for two years and this article and the spoon theory were very good at expressing how I feel, thank you! Do you know of any treatments that have helped reduce your symptoms of pots?

      • Blythe April 10th, 2013 8:37 PM

        Well gosh I’m basically a walking pharmacy since I’m on so many medications. The main ones are: fludrocortisone to increase blood volume, atenolol to lower heart rate, and butcher’s broom to raise blood pressure.
        I’m also in physical therapy, I drink 64 oz of Gatorade a day, and I over-salt my food.
        P.S.–I have a blog specifically about my health problems. It’s http://littleteapotsie.tumblr.com/ if that helps.

    • Isabelle97 April 12th, 2013 7:46 AM

      The spoon theory is amazing. I use it every time I have to explain “why I bunk off school all the time” to my lovely endearing classmates :L

  • Isabella Drake April 9th, 2013 2:25 AM

    Thankyou for that story of yours, it’s was very sad, but also encouraging and powerful.

  • Ashley Sivil April 9th, 2013 3:04 AM

    Naomi, thank you for your openness. It’s nice to read something like this piece and know that there are people who can relate…

    I know it’s not the same, but almost three and half years ago, I was hit by a car. It took my a year to recover from my injuries, and during that time life continued on while I remained motionless. My friends moved on, created new experiences, and made new connections. Today, physically, I have fully recovered so to speak, but the isolation remains. My friends are no longer who they used to be, but neither am I. That’s what happens when go through trauma, no matter its kind: the inevitable consequence is change. The world around you changes and so do you. The only thing left to do is to accept it and to try to embrace the possibilities that open up in front of you. At least, that is what I try to remind myself when I feel disconnected. I try to say that I am just on a different path.

  • Dick April 9th, 2013 4:22 AM

    Not too long ago I was going through a very tough time. I was going through depression and it literally was the worst thing ever I’ve experience but looking back (I’m recovering) it was such a great learning experience but sometimes I forget that it was. I’m still constantly reminding myself.

  • Esme April 9th, 2013 5:05 AM

    just brilliant xxxxx

  • Jolien April 9th, 2013 7:03 AM

    I truly know how you feel. My story way diffrent but I can totally relate to you!

    Thank you for sharing this I kind of needed it today :)

    xxx

    http://jolienlicorne.tumblr.com/

  • Ella W April 9th, 2013 9:41 AM

    This is so good Naomi. It’s really nice to see other articles by you, apart from the diary entries (Your diary entries are great by the way).
    I cannot pretend to understand what you went through, as nothing like that has ever happened to me, but you expressed yourself so eloquently and genuinely that I feel I do understand just a little bit more.

    http://gorillalegs.blogspot.co.uk/

  • Runaway April 9th, 2013 9:57 AM

    Thank you, Naomi! I’m older than you, but I can relate so much to this piece. I’m 25 and I should have graduated from uni 3 years ago, but depression stopped me from achieving that goal. I recovered, but now I have to deal with the consequences of my depression. I have to keep on reminding myself that it wasn’t my fault, that I just didn’t suddenly turned into a slacker, that I just got ill.
    Depression has been a curse, but I sometimes think it was necessary for me at that time. I needed it; I was a very inmature 22 year-old. Now I’m more empathetic and feel more in control of my own life.

  • mary lamb April 9th, 2013 10:27 AM

    Thank you for sharing such a personal part of yourself with all of us! I suffer from Bi-Polar Disorder(major depression) and everyday when I wake up the first thing I do is walk into my little boys bedroom and look at his beautiful face and by doing so it gives me the courage and motivation to pull myself up and out of the sadness.I count my blessings daily to remind myself that everything is OKAY! That it’s just a mood,that I have the whole world around me,and I can handle it. Sometimes turthfully it is easier SAID than DONE.Reading your story really inspired me and touched my heart, it encourages me and lifts me up! Thank you again <3 We are not alone girls!We stand together!

  • starsinyourheart April 9th, 2013 11:53 AM

    I’m not going to pretend that I could read this, because I couldn’t. I had M.E from age 11, in 18 now. I left school, had nothing, nobody. I saw friends with severe M.E pass away only a year younger and older than me. I nearly destroyed myself and I still can’t truly believe I spent so long with nothing. I’m in community college for 3 lessons a week now. I just yesterday got back from a birthday trip to Amsterdam… I cried on the plane because I couldn’t believe I was there.

    I love the stars because I didn’t see them for so long. I was too sick to go outside and I got them tattooed on me when I was 16 to remind me I would see them again. I’m slowly getting better, and all my firsts… I understand. I make them out to not be a big deal and secretly I’m freaking out with happiness. Life is weird. Thankyou for this. So much.

  • eliselbv April 9th, 2013 1:40 PM

    This is just perfect, WOW. I’m really speechless right now because I’ve been looking for that kind of account for weeks.

    http://www.iloveyourjokes.blogspot.com

  • GorillazFangirl April 9th, 2013 2:07 PM

    Wow, you just put what I’m going through into words. I have muscular dystrophy so I get tired standing around/dancing for hours and walking far, which also makes me anxious and nervous going out – even if it’s just to friends, in case we walk somewhere far and I just can’t cope. Glad to see I’m not alone in feeling this way

  • Caitlin H. April 9th, 2013 2:41 PM

    I think you know how much I love you Nome, but I wanna say it again- I love you.

  • Collagingcolors April 9th, 2013 5:01 PM

    Thanks Rookie for this, I can totally relate this for my life 10 months ago I was struggling so hard whit anxiety and depression for 2 years and half
    now i’m taking every minute as a treasure.

    http://collaging.blogspot.com/

  • Kal April 9th, 2013 7:18 PM

    God this hit so closed to home it mine as well just sat down at the dinner table with my parents and I.

    I haven’t ever had/been diagnosed with M.E., but I have several anxiety and depression which I have been taking medication for since the 9th grade. It is so weird to hear someone else talk about what it is like to disappear and not mean to, because I have always felt like that was something that only happened to me even if in the back of my mind I knew it wasn’t.

    I still went to school last year but I had too many mental health leaves to count and I started to spend my weekends sleeping 24/7 rather than going out like I previously did. It was awful but I constantly told myself that I am doing this for me, I am not isolating myself because I don’t want to live but the exact opposite of that.

    Things are better now, especially with the publishing of this here article. Thank you so much for this, it is beautiful.

    Kal

    zymurgyprocess.com

  • AnaRuiz April 9th, 2013 11:17 PM

    I love you. I love you for never going back, permanently…

    http://anaruizwriting.blogspot.com

  • Samantha April 17th, 2013 8:15 PM

    After a terrible flu, I missed an entire semester of school when I was 16. I was sleeping 20 hours a day and couldn’t get up. The (many) doctors I went to told me I was “faking it” or that it was purely psychological. Like you, I withdrew from friends and everything I knew. I had no other option.

    I cried when i read this. It’s my story, too. I am twenty years old and just beginning to learn what ‘normal’ feels like again. I’m on an extremely regimented diet to help with my energy levels and hyperthyroid (stress) issues. I would love to talk to you more, feel free to email me if you see this: fearisadirtyword@gmail.com

  • LeonieBlue1 May 17th, 2013 6:42 PM

    Naomi, I really liked your report and I am very sorry for you having such a hard time. It’s great that you’re feeling better now.
    While your report is probably absolutely complete relating to you, I would like to add something referring to the disease ME in general.
    ME is, as you said, a neurological disease and it can – as every physical disease – be combined with depression, but it hasn’t to. In case it is combined with depression or anxiety, it’s even harder to deal with it, as you describe very colorful and touching in your report. But having ME is not automatically connected to having depression. I think this is important to mention because it can be very dangerous to get a wrong diagnosis. If you are suffering from a mental disease it is clear that you have to be treated and medicated differently than if you are suffering from a physical disease. But this does not seem to be clear to everyone: There are many people who mix up ME and depression (not to say that you did so but there are A LOT of people who do so as I know from own experience, even doctors) and that can have severe consequences and change someone’s health for the worse. I read a lot about it and it seems as if the situation for ME patients is a lot better in other countries than it is in Germany, where I live. Here you can even find doctors who don’t believe in what their patients tell them and who think that they are just feigning, because they don’t know ME or doubt that this disease exists (I know, it sounds crazy, but it’s the sad reality at least in Germany). I know a lot of people suffering from ME whose condition got worse because they were treated as if they had a depression.
    I think this could maybe be an interesting information for people, who feel weak and are searching for the reason, or resonate with your article in any way. That’s why I mentioned it. But regardless of that your report is very well written and it’s really sad to read it. I hope you get completely well as soon as possible. Good luck!