Room for reality

It’s not a secret that I’m an optimist. I look for the good in everything and everyone, and I always try to give other people the benefit of the doubt. I believe in the power of positive thinking, especially when it comes to living day in and day out with a chronic condition.

I am also a realist. I like to be aware of and prepared for all possible outcomes, and I don’t hide away from the parts of life that are messy or uncomfortable (except for the dentist…I really need to make an appointment…). And as a realist, I believe that positive thinking can sometimes be hurtful, too.

Just hear me out…

One of the hardest parts about living with a chronic illness is grieving your old life and accepting your new normal. It’s an ongoing process and I still have days, or even weeks, when I’m totally just bummed out by my life.

What makes this process even harder, though, is that the rest of the world has a hard time accepting that a chronic illness isn’t just a temporary thing. As humans we do not like to see each other suffer and we do not like to feel helpless. We just want to be able to say something, anything, to support each other. As such, those of us with chronic illnesses hear a lot of various forms of the following:

Don’t think like that, you never know what will happen!

Just stay strong and one day this will all be behind you!

Things are going to turn around for you, just you wait!

You’ve just got to stay positive and things will get better. I can feel it!

(And a personal face palm favourite of mine) You’ll be eating [insert delicious food here] before you know it!

I know that when people say things like this they are coming from a place of genuine care and concern. I know that, and I appreciate that, but hearing things like that is when positive thinking becomes more hurtful than helpful. While we are just trying to come to terms with the fact that our lives will never be the same, the rest of the world is trying to encourage us by convincing us that it’s all just temporary.

I can clearly remember feeling caught in the middle like that in the weeks after my NJ tube was pulled. It became clear to me quite quickly that I was probably going to need a more permanent feeding tube. Of course I was hoping for the best but I was also trying to prepare for the fact that my life was about to drastically change. The problem was that no one let me say so; whenever I mentioned it I was told not to go there and not to give up. I was told that if I just kept fighting I could get better. The rest of the world was not ready to face my reality so I had to face it alone.

Without a touch of realism, optimism can do more harm than good for people with chronic conditions. We start to doubt ourselves and think that maybe we’re just not trying hard enough. We try to keep our expectations in check with reality, but then we start to wonder if we’ve confused being realistic with being pessimistic, and if doing so is keeping us from getting better. So we put on a smile and we pretend to be positive when really we just feel isolated. We’re still going to worry about the future, but we’re going to be alone with those worries.

It needs to be okay to talk about reality. Hope for the best, absolutely, but it also needs to be okay to prepare for the worst. And here’s the thing: when we are honest and upfront about less than ideal, yet realistic, outcomes, when we get the chance to really wrap our heads around them, we are able to fight harder to avoid them. Making room for reality does not make us lesser patients or lesser people, but it does make us better advocates. It makes us stronger and better prepared to face whatever life deals us next.

Optimism and realism are not mutually exclusive. The way I see it, reality exists whether we acknowledge it or not. Think about it like a room. Reality takes up a certain amount of space in that room. When we try to ignore reality, we end up feeling isolated, doubtful, confused and worried. All of a sudden we have these negative emotions taking up space in that room, as well, which means we have less space for optimism and the good things in life. When we acknowledge reality, however, when we face it and let it exist in our lives, we rid the room of those negative emotions and we end up with extra space!

I’m an optimist, but I’m also a realist. In making room for reality I ended up with that extra space!

So I choose to fill it with joys and silver linings.

And I have reality to thank for that.

Joy jar

5 thoughts on “Room for reality

  1. I have been struggling with EDS for almost 10 years (pretty much my whole life but bad for almost 10 years). I have a lot of similar issues as you and happened to come across your blog tonight after clicking a Facebook post I saw. I can’t begin to tell you how amazing this has made me feel to have someone who gets what I’m going through. As I’m reading your posts I literally feel like I could almost be writing them (with the exception of the feeding tube). I just want to let you know that your blog has made an impact on me and not that I’m happy you are also struggling but like you said in your post it has made me feel less isolated. To know someone knows and is dealing with the same feelings and emotions is heartwarming. I can’t thank you enough for sharing your story. Thank you and here’s to keep on keeping on😉

    • In this comment you said something I say all the time – how it’s a little heartbreaking to know someone else is going through the same struggles as you, but how it’s also encouraging and comforting. So that said, I wish you weren’t struggling with EDS but I’m also really glad that you can relate to what I’m saying and have drawn some encouragement from that. Hang in there, Denise!

  2. When we were dating, I came home one day to tell my future husband what a crappy day I had had. I said that I had f@cked something up, and had created my own problem. My dear, dear, hubby responded “That’s okay, anyone would have done it.” Perfect answer. He didn’t poo-poo my belief that I had messed up, and he didn’t make things worse by calling me a f@ck up (1st husband’s favorite). Reality. Reader, I married him.

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