We Need to Talk About How Scary Chronic Pain Is

When I write about my life with fibromyalgia, it’s sometimes to connect with others who experience chronic pain, sometimes to raise awareness and sometimes it’s for my own catharsis.

• What is Fibromyalgia?
• What Are Common Fibromyalgia Symptoms?

This time, it’s about stating the obvious. Or at least what should be obvious, but is sometimes forgotten while we focus on the other, more complex issues that surround chronic illnesses like fibro. Something that I seem to have forgotten about, even though it’s always present.

Fear. Being in extreme pain is scary. Told you it was obvious, didn’t I? The thing is, I seem to spend so long focused on the pain and how to reduce it or cope with it that I often  forget it’s so scary, until I find myself in the middle of a panic attack, or notice that I’m subconsciously tensing up.

I’ve read a few times before that patients with fibro are kind of stuck in a fight or flight response and it’s like their bodies are braced for the fight even before or after it happens. Permanently. Which is as exhausting and spasm-inducing, as you’d imagine!

This is a big reason why it’s important to practice some sort of relaxation. Again, that sounds obvious, but it’s honestly hard to focus on much at all when you’re in agony most of the time.

I’ve decided that pretty much every aspect of fibro is a vicious cycle, until we’re spinning around in so many cycles at once that it makes us dizzy!

Pretty much the hardest part about being in such pain and so fatigued is the knowledge that we have only the same struggles to look forward to in the following days, weeks, months, and years.

As if all of that wasn’t enough already, there’s more. Pain tries to control you. It tries to define you and to take away the things that you love. All scary stuff, along with the fact that it will often succeed in these areas.
Thinking about the wide-ranging effects of chronic pain is inevitably scary.

Here are just a few examples of how mine affect me:

• I can no longer work
• I experience problems with temperature control
• My hair sometimes falls out
• I find it hard to concentrate
• I have never slept properly or felt rested
• I sometimes say the wrong words and then feel embarrassed

There are many more but I think you get my point — it’s not nice and the symptoms are ridiculously wide-ranging and seemingly random! The scariest of all  is missing from my list of examples — pain. Let’s be clear, I’m aware that the pain fibromyalgia brings is both physical and emotional — how could it not be when it hits every part of you and then sticks around for the rest of your life?

For the purposes of this piece of writing though, I’m referring to my physical hurting because this is the one that, for me, is present every second of every day.

Pain by its very nature varies from one person to another, so chronic pain illnesses are extremely difficult for anyone else to comprehend, even if they also have the same condition. This can be very isolating and can contribute to feelings of loneliness and of being misunderstood and marginalized.

This is precisely the reason why I write these pieces, and why I read lots of stuff written by others with the same/similar conditions. There are such high rates of depression and suicide amongst the chronic pain community, that it’s so important to share our experiences and try our best to support each other and make each other feel listened to and understood in a world where we are rarely confident that we’re truly seen and heard.

So, for all of my chronic pain friends and anyone else who lives with fibro or a similar illness — I get it. I may not know exactly how it feels to be you, but I can absolutely identify with the fear that comes with your pain.