The Positivity Fairytale.

I hear the phrase “you just have to stay positive” or “be more positive” on a daily basis, and more than once.
Don’t get me wrong, I’m all for positivity and having hope in management, recovery and learning to love myself and live with this illness. I understand that it works for a lot of people.

I don’t believe, though, that it is as simple as just “thinking positively” and all of the problems suddenly disappear.
You may disagree.
I know this topic will spark some controversy…
But, there is a massive difference between staying positive, and being open and honest about Chronic Illness.

Lets face it.
Chronic Illness is ugly.
It brings a whirlwind of symptoms that attack your body, dramatic life changes, as well as emotional and mental changes for yourself and those around you.
I am yet to come across a person who is struck down with a mild flu or Gastro Virus, and is running around the room being thankful for getting sick and having a few days of low immunity.
So, why would you think that I would be jumping for joy every day with my illness? How am I any different to you? Do you think that I wanted any of this? How is it possible to remain positive about it every moment of the day?

It is a struggle, and I see no shame in being honest about it. I encourage you to write honest posts and express yourself freely about your feelings in regards to your illness and suffering.
Being honest about your feelings will help you accept the illness. It helps others understand, and it connects you to a community of sufferers.
You should not be ashamed to share your true emotions. In order to promote awareness for our diseases, we must talk about our bad experiences, as well as the good.
I have bad days.
I have really bad days.
Occasionally, I have good days.
I am not afraid to write or speak about them, because once my feelings are out in front of me, I can move forward. Writing is a release. Without it, I would be in denial. Things for me will never be the same. I may never have the life I did before, and I may never have a formal diagnosis BUT what I do have is a chance to have a great story.

Telling someone to “stay positive” during this rollercoaster period, is not as great advice as you would think.
Does positivity miraculously cure my illness?

No.

Friends and family are overly focused on being positive. This is not a bad thing, but it is definitely a lot of pressure on the suffering to feel happy and content with their current situation.
Chronic Illness is not a walk in the park, and the world needs to accept that.
It also isn’t all about the symptoms. It is about how our families are effected, how our lives are effected, acceptance of the change and our new bodies.

How is someone meant to have positive thoughts when we receive insulting commentary like, “how are you exhausted when you don’t do anything all day?”

I used to be what society considers to be normal – going on roadtrips, shopping until my legs ached, working double shifts, going for walks, seeing friends, driving the streets…
Now I can barely walk around a shopping centre or stand for long enough to make a cup of tea…
But let me tell you something.
When I DO manage to achieve these things that you consider tiny, it takes a lot out of me. I try and do little things every day, and when I do, I am incredibly proud of myself.

I didn’t ask for any of this.
I don’t enjoy being on crappy Government payments, or the days spent in Doctor’s Clinics. I don’t enjoy being ill every day, and missing out on living.
I am judged.
I am judged for being on Government Payment.
I am judged for spending my days in appointments, with no answers.
I am judged for trying, despite having no answers.
I am judged for being ill.
I am judged for not being able to be the way you would expect me to be.

Being positive all of the time when dealing with illness, and especially an Invisible Chronic Illness, is unrealistic. In fact, being excessively upbeat is often linked with being in denial. Keeping an optimistic outlook can be incredibly tough, because NEWFLASH, chronic illness is terrifying. The uncertainty is terrifying and forces us to deal with a lack of control, surrendering to Doctors, trusting random people with our bodies, and the sad reality that life is finite.

This post is not me telling you to be negative every day and give up. What I recommend is finding a balance between the feelings of despair, and feelings of optimism. Do the best that you can to control what you are able to – decisions about which Specialists to see, what treatments you wish to try, a gameplan of your own, small goals each day. Find little things that you are thankful for, rather than constant positivity.
And most importantly, open up to family or friends who can tolerate hearing about ALL kinds of feelings. Do not put on a facade around people, or the blogging community. It is naive to think that we will hear you at your best all of the time.

You are allowed to say that this isn’t fair, that life is now unbearable, that you are confused, lost and terrified. And, if nobody wants to listen, I will listen. Because, I know what all of this feels like… The good and the bad. I won’t tell you to “stay positive”, but I will tell you to stay.

You have a story to tell… a novel of life, love, loss, struggle, acceptance and change.
I encourage you to tell your story; read it aloud, as I will mine.
Real life is no fairytale.

68 comments

  1. There is nothing wrong in being sad once in a while & cry your heart out loud. What we should learn is to avoid being consumed by its darkness and that’s why we need to be positive. It won’t cure your illness but it protects you from drowning. Stay happy 🙂

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  2. You have a right to express your feelings and emotions, don’t let others tell you otherwise.

    If a nurse, doctor or any medically allied person told you to be positive by lying about your illness, and feelings, report them to the authorities. They shouldn’t be talking to patients and telling them that being positive is lying about their situation and fooling their selves and the people around them.
    So, if that’s what they told you it’s wrong. Forget what they said. I’m so pissed with authorities who are misleading people. Instead of helping them,they’re telling them to lie. Those nurses and doctors of yours shouldn’t be practicing if that’s what they’re telling you that about positivity.

    Being positive is not about jumping for joy because you’re ill or for example because someone is dying of cancer. We both know that’s idiotic and stupid. Nobody should be happy because they’re sick that’s called lying to their self and fooling their selves.

    It’s also not about pretending you’re okay, when you’re not.

    Being positive is despite having all the worst problems in the world, someone is still hoping that something good or a miracle will happen.

    People say be positive because being negative is detrimental to someone physically, emotionally, physiologically, psychologically and spiritually. That’s why stressed people either have stomach ulcers, heart diseases and hormone problems because they’re too negative.

    Tired of being positive? Let it out. Get angry, say what you mean, cry, and talk to your friends and loved ones.
    Tell your story.

    I can’t believe this. Maybe you should change your caregivers if that’s what they’re telling you about being positive.

    I’m gonna stop now before I start swearing at them.

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  4. I wrote in a post a few weeks back, that the daily affirmations, to be positive, in some ways were making me feel worse about myself, so I totally get where your coming from.

    I feel we use these daily platitudes because , what else can we say?, your situation can get better, and being in recovery I know the hard work I had to put in to function each day and for it to get to the point where I was no longer hostage to my depression.

    Taking each day as it comes and accepting what the day brings, works best for me, some days I feel positive some days I don’t but, it’s ok.

    I enjoyed your post:)

    Take care

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  5. Tried to like you post, but it took me to a dead page.

    When someone tells you to be positive, respond like this: “I am positive I hurt continuously!” “I am positive I am going to vomit!” “I am positive that being bent over in pain is not good for my posture!” or another sarcastic statement that need to be thrown in their face.
    Keep writing as much as you can!
    Jeanette Hall

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  7. It’s the hardest to stay positive when others don’t believe. I believe and I know the struggle is real. It will be better for us. And each small task is another victory we can chalk up to pushing through and winning.

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  8. Hi Cass. I agree with you and others who have responded. It is not reality to be upbeat every minute. I certainly have my carrying days that I let make myself 1.be depressed as I possibly can be. It may sound harmful, but when I do that, concentrating on doing it inhibits any negative action. 2. If it is time for a good cry, I let ‘er rip. I kinda freaked the other day when you talked about giving up. Because if a strong person like you gives up, what chance do I have?

    I know how the desperation to get relief feels like. I too long for a life close to what I had before all of my shtuff started.

    As someone else said here, please keep writing. Even if you say the same thing over and over. I will read and comment. You will not be alone. 😶

    Leo

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  11. I think for many of the people who offer the tired advice to “stay positive”, it is purely out of a lack of anything better to say. People are made so uncomfortable by people with disabilities; they can’t decide if they should stare or avoid making eye contact. Even if they speak to us, they don’t know what to say so they resort to cliches. It’s sad but true.

    We don’t need people to rush to comfort us or give us ‘encouragement’, we don’t want or need to hear the false praise of ‘oh, you are so brave!’ All we want is for people to understand us, to listen. Just be there and listen. That’s all. Let us bitch and moan when we need to. Let us cry and scream when necessary. And let us laugh too. But don’t try to ‘cheer us up’; that is not what we need and it won’t help us feel better (scientifically proven, btw).

    *sits with Cass and has a cup of coffee*

    ❤

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    1. I could use a coffe right now, Zo!
      Your first sentence sums it all up.
      People have no idea what to say, so we get the cheesy halfhearted encouragement speeches!
      We are not asking for the world… just for someone to listen xxxx you have me!

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  12. Yeah, it is frustrating when someone tells me how to feel. Some people have a hard time validating and accepting others feelings for what they are because it can trigger things within themselves, whatever that dynamic is…my sister does this to me but she doesn’t realize it. It is the way she processes. And I agree, acceptance of illness and other significant things in our lives, takes time, our own personal time. I’m glad that positive and negative states can be flexible enough, even if minutes, hours, days or months… to be breathable within…even if that breath hurts for awhile.

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  14. stay positive is such an insipid yet stinging phrase. It sends me mad too, almost as mad as when people say ‘oh, I know how you feel I’ve had a stinking cold for days’, aaarghhhh!!!!!

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  15. I kind of know where you’re coming from. I think a lot of people are under the impression that if you think positive, everything is magically better. However, you have to practice facing fears and take care of yourself in order to be able to think positive. You have to take manageable but significant steps to getting better and getting healthy. It’s not always easy to stay positive, but it is possible if we work hard.

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    1. Yes, one needs to “remain positive” to be willing and able to move forward at all, but that does NOT mean remaining positive at all times no matter what.

      Staying positive in situations that are chronic is a bit like maintaining weight loss in this manner: similar to outlook, weight fluctuates daily, sometimes hourly – and certainly yearly! I would expect a surly look (if not angry response) from anyone who had jumped through who knows how many challenges to lose weight if I caught them weighing immediately after a big dinner, for example, and chimed in with, “You have to keep an eye on your diet! It’s not easy but it is possible if we work hard.”

      Let’s expand the analogy to “caught them weighing right after the winter holidays” when they have actually gained a bit of weight? Chiming in with supposed “encouragement” at that time is not likely to be helpful and might likely inspire a “What’s the use?” reaction that would be counter-productive.

      In my experience, until we have walked that mile in the shoes of another, we have no right to believe we can judge anything at all about what they must do to keep walking — ESPECIALLY under the guise of “helpfulness.”

      The most loving (and potentially helpful) comment we can make might be something along these lines: “Oh honey, I am so sorry that today is a horrid day for you. Is there anything I can do to help?”
      xx,
      mgh
      (Madelyn Griffith-Haynie – ADDandSoMuchMore dot com)
      – ADD Coach Training Field founder; ADD Coaching co-founder –
      “It takes a village to transform a world!”

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  19. It’s important to feel your feelings. You are right to get them out. Write away and know things will turn around until they do you have the support of your friends and followers on here. Feel free to write me if you need to vent or if you just need someone to talk to. Feel better and keep on writing.

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      1. You have my facebook I think. if you want to get in touch. Just write me and I will listen and write you back. I only work one day a week. I am usually at home all the time writing my short stories. I am on facebook a lot talking to my online friends. Don’t have many in person friends just online, so I am around write me if you need to and keep posting and writing your blogs.

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      3. No problem Cass I do care about you and I hope to see you start feeling better very soon. I can’t heal your illness but it helps to have another good friend and support when dealing with a difficult illness.

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  21. I agree with you so much, some people go so far as to say that if a person dies from cancer, they weren’t positive enough!!! Now that is really carrying it too far! Yes we should be positive, (Try it when you are in a dismal depression), and positivity helps, but it cannot cure us and we are not to be blamed for our illnesses! Thank you so much for posting this!

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    2. That is SO true! I got breast cancer a few years ago. I was sent to see a hospital aromatherapist/masseuse/general complementary therapist and the first thing she said to me was, “As long as you stay positive, that’s the main thing.” By then, several months into hearing that on a daily basis, I rounded on her and said, “Do you have any idea what you’ve just said to me? You’ve just told me that if I die from this shitty disease, it’s MY FAULT for not being cheerful enough! Please never say that to anyone with cancer. It’s insulting, it’s upsetting, it’s judgemental, and it isn’t even TRUE!”

      Poor woman. She’d never thought of it like that!
      L x

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      1. PS I should add that I don’t think it should be said to anyone with ANY serious or chronic illness. It definitely makes us feel deficient, which isn’t helpful. I have fibro now too, and get the positivity speech all the time. Drives me potty!
        L X

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  22. I agree with you. If it were so simple to just be positive, then everyone would be doing it. It is ok to be truthful and not be fake about it. When we stop fighting our feelings we can always be more spontaneous about expressing ours joys.

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    1. Thank you!
      It is so hard to hear ‘stay positive’. It’s a lovely thought but it doesn’t change anything. We are still sick. If we stay positive then people think we are fine… When we aren’t. We deserve time to grieve and accept… Even if it is negative.
      I’m so sorry about all you have had to go through. I hope you are in better health now! xxx

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      1. Thanks! My pre-existing “mystery illness” that went undiagnosed for thirty odd years (some of them VERY odd!) turned out to be fibromyalgia, and only got dx’d after chemo et al made everything far worse. It was a huge relief to finally get a dx that made sense, but it wasn’t the key back to health that I always thought it would be. I was like you, Undiagnosed And Indisposed for the longest time. Now I’m Diagnosed, Still Indisposed, so the dx hasn’t changed a thing.

        -Thanks for the follow, just seen it pop up 🙂
        L. X

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      2. You are a tough cookie! Chemo and a mystery illness?! You should be proud of your strength. I know it is an awful ride. Fibro comes with a lot of pain and fatigue, am I correct?

        Well thank you for the follow. I am so happy to connect with anyone who has suffered that I can!
        xxxx

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      3. Thanks, Cass 🙂
        Yeah….oddly enough fibro comes along with a lot of the same things that chemo brought to the party, and chemo brought extra complications on top. I’m not remotely tough,
        though thankyou for your kind words on that. You’re right about the pain and fatigue. It’s like wading through wet concrete on the rare occasions I manage to drag myself out of bed. Wet concrete with barbed wire running through it.
        I’m going to read through some more of your blog, so I can understand what you’re going through, too.
        Hope today is a good day for you.
        L. X

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      6. Cass, hi again. If u have a sec, I’d love it if u would check out my Flare You Go Again…..And A Note About Positive Thinking post.
        What time is it with you?
        L. X

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  26. I’m loving your posts, Cass! Keep writing… you give me peace in knowing I am not alone, in fact, I am in good company!! Thanks!

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  29. You are causing a little storm on WordPress I’ve noticed with your posts. They are profound and filled with pain that I can relate to and feel. Keep causing storms indisposed! Your storms will blow down the stormy clouds of others who read them.

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  31. On days like today, when someone tells me to “be positive” I tell them this:

    I’m positive that the next person who tells me that is getting an ass woopin”

    That usually gets people to leave me alone at least. Those are the words that I hate the most from my family and friends. I’m always the upbeat one, the funny one, I laugh a lot and I try REALLY hard to be upbeat but when you are in AGONY for DAYS and there’s no end in sight, it’s hard. I’m ALLOWED to be a bitch on occasion. I’m ALLOWED to be grumpy when I’m hurting my worst. My friends and family know that when I don’t even get dressed…. it’s best to just leave me alone unless you’re bringing me tea or a new crossword book 😛

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  33. You don’t need to “Be positive” or “Be happy” you just need to “be”… whatever it is that gets you through to the next day.. that is what you need. Positivity comes way after so many things like patience, strength, courage and tolerance.
    It’s ok that people don’t understand what to say or what to do and it’s even ok if some people can’t handle it. Before it was me, my response to you would have been “stay positive” or something along those lines. Only those unfortunate enough to know better, know better.
    xo

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  35. Pingback: Tales from the ADD Dark Side | ADD . . . and-so-much-more

  36. Sing out Louise (as they say in the theatre)! Watch for a ping – I just back-linked this post to one on my blog written in 2011 (also cautioning against positivity): Tales from the ADD Dark Side — Disability vs. Difference.
    xx,
    mgh
    (Madelyn Griffith-Haynie – ADDandSoMuchMore dot com)
    – ADD Coach Training Field founder; ADD Coaching co-founder –
    “It takes a village to transform a world!”

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  38. The postiviity fairy tail…(well said) is a toxic by product of the HMO emphasis on behaviorism over psychiatry.

    It’s about being cheap at the expense of others.

    That needs to be said as loudly as possible for those of us who need real treatment and real medicine.

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  39. Am going to be the odd one out here- nothing unusual there 😉 am used to this- am a rebel with a good cause batgirl!! Whilst do not like people telling me to keep my chin up especially even more so as am one of the most optimistic people you will meet even though battle moderate severe to severe pains/challenges constantly- am certainly not a shiny happy person(do keep it real) plus am no robot except a rusty one yet am very positive plus really do see the benefits of positive affirmations as well as keeping as positive as possible as it sure does help the body, mind as well as spirit, absolutely it does!! Yet, have received much hostility for my optimistic positive survivor attitude from many others with chronic pain even though have never been evangelical about it- some have been very catty to me in both face to face support groups as well as in online ones(sad to say yet true)- so this needs to be said!! Life is no fairytale yet it is not for anyone let alone someone with chronic pain- yet life is not supposed to be fair anyhow- like the quote “Expecting life to treat you fair is like expecting a lion not to eat you as you are a vegetarian”- so it just is the way it is! Am very philosophical plus have a keen sense of humour- make light of my challenges plus use humour to help me rise up above the pains- not a victim kind of humour yet from a survivor mindset humour(the two are drastically different)- both of these help me to be positive as well as resilient!

    Have a great many health challenges plus recently had another one added to the mix for good measure yet this feisty batgirl is a warrior(Sisu) so keep on bouncing back!

    Some people with chronic pains can be toxic to your spirits- bitter twisted- stay well clear of them! These days am savvier as to company keep plus do not let any drag me down when they see my positivity as a threat!

    Do get angry, to cry, do get frustrated and do vent freely- like said am not a shiny happy person yet a down to earth Pollyanna-yet, do believe in the power of positive thinking plus the language we use internally as well as spoken has great power for positive or negative dynamics so we need to be mindful of this!

    Am a firm believer in neuroplasticity!

    Positive thinking along with humour has the dynamic ability to enable, empower, inspire, as well as help us to become more courageous plus resilient yet when we shine a light for ourselves we also shine a light out into the world for others!

    Just look at Michael J Fox, Morgan Freeman, the late Christopher Reeve and many other chronic pain warriors that chose optimism- how much it helped them!!

    Thanks for listening.
    Please look at Fibromyalgia & Me SG on MDJunction.com for lots of inspirational articles, okay!

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