“Be Positive”: As helpful as the Microsoft Paperclip

And who wants to be like the Microsoft paperclip?

I have chronic fatigue syndrome (cfs). One day in March last year I came home from university placement feeling drowning-tired and crawled into bed expecting to sleep all weekend and be better by Monday. That was over a year ago, and I’m still waiting for that magical Monday.

There’s a lot about having cfs that sucks (shocker). It sucks that on bad days I’m so tired after showering that I need to lie down. It sucks that my once-serviceable memory appears to have sprung a leak and I now have to make checklists to remember basic daily things. It sucks that reading is tiring, that writing is even more tiring, that if I draw too many blog-pictures in a day I start to feel sick.

It sucks that my short-term goals had to be dramatically altered—from ‘start a career’ to ‘maintain a blog’, from ‘make money and save up for cool stuff’ to ‘maybe sweep the floor if you’re feeling up to it’.

But what I hate the most is when people, usually after hearing about my altered goals, tell me that I shouldn’t think like this, that I’m being ‘too negative’ and I should ‘be positive’.

I hate this for a whole bunch of reasons. One is that it’s actually normal to feel bad when bad things happen (and unhealthy to bottle that up). Another is simply because being told what to do and how to feel is a universally loathsome experience. But the main reason I hate it is because it twists the word ‘positive’ into something inverted and monstrous. And I think the reason I feel so strongly about it is that because before I got sick it was my view of ‘positive’ too.

In this sense of ‘positive’ my recovery is not only certain and imminent but it will be the glorious restoration of my life. To ‘be positive’ I must stay focused on that and ignore this ugly illness business, which is ‘negative’.

This version of ‘positive’ is saying that being sick is being broken. It says that I don’t have a life now and I shouldn’t think about and plan for this not-life.

Here’s the thing. What if I never get better?

You want to know something scary? Not everyone recovers from cfs. Most people—the vast majority of them, in fact—do improve, but some don’t, and there’s no way to tell where I fit into those statistics.

So, hypothetically, what if I never get better?

What if I never get better and the only things that matter to me are things I can’t do while I’m sick? What if I spend my entire life planning for when I get better rather than living now? To me, that doesn’t sound like a good mindset. That is not positive. I don’t want to die of old age 60 or 70 years from now bitter that my ‘proper’ life was stolen from me when I was 24.

Don’t tell me that I’ll get my life back when I am better.

Tell me that I have a life now and will have it until I die, whatever else happens.

It won’t be the same life I would have had if I’d never become sick, I know that. Like I said, there’s a lot about having cfs that sucks. Sometimes that makes me sad. But sucky things happen in all lives to all people. Cfs might give me a different life with different sucky things, but it will not give me lesser one.

And I’m not writing this to convince everyone else to rise up in chorus and say the things I want to hear. I’m writing it because maybe I can convince myself to.

Because I will have a life. Just watch me.

7 responses to ““Be Positive”: As helpful as the Microsoft Paperclip”

  1. jule Avatar

    You hit the nail on the head! And I agree, if I hear one more person say, “be positive,” “you’ll be fine soon,” “have you tried xy and z” etc etc I will cast a banishing spell and let loose my inner Slytherin on ’em! I do realize why we get this response so much- people are uncomfortable with illness and feel helpless at best or truly believe they have an answer (or are just insensitive). But you do have a life, a rich one, which may be lived at a different pace and scale than those who are not ill, but no less valuable and full of meaning. Your blog is proof of that! I have friends (and my grown kids) who I’ve trained ;) to ask how I am *today*. It gives me a chance to be honest and they don’t feel like they are walking into a minefield.

    And how are you Today? Am sending good thoughts!


    1. silencekilledthedinosaurs Avatar

      I agree with your reasons for why people say it (or other things). I know that before I became sick I would probably have said similar things for those reasons. Maybe it’s weird to say, but I like getting new perspectives, either from my own experiences or from hearing about the experiences of others. There are so many things you don’t realise that you don’t understand until you do.

      I’m okay today! (That is a good thing to ask.) Thank you for those good thoughts. Lately I’ve had a few really tired-yucky days and have got a bit sad about it, but I feel like I’m doing a bit better again. How are you today?


      1. jule Avatar

        Ironically, pretty much like you feel. Up and down, like riding a rather merry-go-round with a seriously weird sense of timing. I have been listening to lots of new (to me) music lately and watching “Castle” tv show from season 1 on for my mental health ;)


      2. silencekilledthedinosaurs Avatar

        I love Castle! Excellent mental-health-boosting choice. I shall be sending you good thoughts, and maybe that the merry-go-round will let us both off soon.


  2. Problems With Infinity Avatar

    I seriously am in love with the way you write. I don’t really know how to describe it. But you bring power and depth to a lot of the things you write and then touch it with a glaze of humor. “Because I will have a life. Just watch me.” GREAT ENDING!!

    Also omg are we actually like… I don’t know twins or something… it’s just weird really… We seem so similar.

    I don’t have cfs, but a few years ago I started to have seriously bad autoimmune problems, and super increased sensitivity/allergies to everything, which really hurt my ability to concentrate/think/socialize/live a normal life. The idea of being able to have a job like a normal person seems so foreign to me, and I definitely feel so alienated from people I used to be friends with. And everything you write here is so true, and I agree with you so much it hurts about the positivity thing. It’s not like faking being positive makes all the pain go away!

    It’s much better for me to cry and scream and be who I am, rather than trying to fake something I’m not…

    Closing thoughts: JUST STAY POSITIVE, YOU’LL BE FINE! Just kidding! Just be you, because you are awesome, and your words and thoughts are beautiful and powerful.

    Liked by 1 person

    1. silencekilledthedinosaurs Avatar

      Gosh! Thank you so much! You keep making my blush with compliments, especially because I think your blog is really awesome in the kind of way I’d like my blog to be. Definitely be your crying and screaming self. And apparently cfs can be quite similar to some autoimmune conditions; cfs also gives me a lot of trouble with concentration and clear-thinking.

      Liked by 1 person

  3. Change | Jewels of Endearment Avatar

    […] as one lovely young lady, Lucy Grove-Jones wrote in a wonderful post, It won’t be the same life I would have had if I’d never become sick, I know that….. […]


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