September is Pain Awareness Month. Awareness months are important for all health conditions but some people might wonder why we need one specifically for pain. They might think that it doesn’t need awareness because everyone already knows what pain is. That’s true, everyone (apart from 1 in a million people) experiences pain. But what most people don’t realise is that living with chronic pain is completely different from normal pain.

It might seem like chronic pain is no big deal because it’s not a major life-threatening illness. But it is a big deal. People suffer greatly due to chronic pain. It affects every aspect of life. Nothing is unaffected by it.

Even most doctors don’t really appreciate that. They ask patients to describe their pain so they can understand what’s going on. Is the pain sharp, burning or aching? Where is the pain? When did it start? How severe is it? When’s it at its worst? Those are important questions that doctors do need to ask but they never ask what living with constant pain is really like. And that’s a question doctors should be asking because they need to look at the whole picture.

Living With Chronic Pain is Difficult

There’s more to chronic pain than just the pain. It’s more than struggling to get out of bed in the morning. And it’s more than swallowing painkillers alongside every meal. It’s so much more than those things.

Living with chronic pain is difficult. It can be so debilitating, exhausting, limiting and extremely frustrating. And very cruel.

It steals every ounce of energy we possess. Mentally and physically, we become exhausted and can’t cope with normal life. It steals careers and education and removes opportunities of bettering ourselves financially. Instead, it often burdens us with money worries and debt. And guilt.

Our world becomes smaller as the pain destroys relationships and ruins friendships. Our social life can be non-existent and we often have to deal with loneliness and isolation.

We often lose independence as we might rely on help with basic tasks like cooking, cleaning, dressing and washing. That can feel embarrassing and even degrading. Our personal hygiene might suffer too as showering or bathing can be too painful or exhausting.

Chronic Pain is Controlling

It dictates the type of life we need to live. Every action we take is controlled by our pain. Not only our actions, but it can also control our thoughts, moods and emotions. It can remove our self-esteem and self-confidence and replace them with anxiety, fear and depression.

It can control who we are and who we become.

So many things are lost due to chronic pain. But the most difficult loss to cope with is when people feel they’ve lost themselves. They look in the mirror and don’t know who they are. The life they once had is gone. Forever.

What Some People Don’t Understand

There are many people who don’t live with chronic pain who empathise and try to help those of us who do. But some people don’t understand nor do they try to understand what life can be like.

When you live with chronic pain, every action has consequences. Pain stops people from doing some things and causes more pain when doing other things. This means that we often need to make choices about what we can and can’t do. People also don’t realise just how unpredictable chronic pain is. The pain is always there but no two days are exactly the same because pain levels can fluctuate so much.

Then there’s the infuriating payback pain. Whether we go out for dinner, go shopping or do something as simple as take a shower or brush our teeth, there is normally a price to pay for it. And that price is more pain.

People don’t understand how big a struggle life can be. They believe that there must be an easy fix for something as simple as pain. But there isn’t. Medication isn’t the perfect answer as it never really helps enough and tends to come with side effects. And getting medication isn’t easy either as doctors are becoming more reluctant to prescribe it for chronic pain.

Chronic Pain is Unimaginable to Many People

Chronic pain is unimaginable to most people. But it’s not to me or millions of other chronic pain patients around the world. Millions of people live with chronic pain and their voices need to be heard.

People With Chronic Pain Need to Be Heard

On Twitter, I asked the chronic illness community to complete this sentence: Living with pain is extremely _____________

Living with pain is extremely ___________ (fill in the blank.)

Your answers may be used in a blog post.

— Despite Pain (@DespitePainBlog) August 22, 2021

Here are a few of the responses but please click on the Twitter link to read the whole thread and add your own answer.

Chronic Pain Voices

Exhausting

Xelaya: Exhausting, time- and energy-consuming, depressing. Like a punishment every time I do something outside like doing groceries or just going out with friends (I do it anyway but have to pay afterwards for days)

Invisible

Dolores Allen: Invisible to others as we become experts at disguising it, in essence, it’s an invisible torture.

Frustrating

Caz, who blogs at Invisibly Me: Living with pain is extremely frustrating given its relentless, incessant nature. It can irritate, aggravate and drive you up the wall, and there’s no break from it.

Tiring

Minimal-ish, who blogs at Minimal-ish: Tiring…mentally as well as physically. Explaining myself to doctors and my family. Made to feel bad on the days when the pain is so bad that I can’t explain my decisions…not to eat, need quiet time etc

Depressing

Meadow: Heartbreaking, depressing, stressful, anxiety-provoking, debilitating and life-stealing.

Disheartening

Coach Tark: Disheartening. When you think you’re doing better or even good, you get setback. Your good attitude and energy you might have today, is non existent the next because all you can do is lay in a ball.

Lonely

Rhiann Johns who blogs at My Brain Lesion and Me: Isolating. I always feel so alone when in extreme pain, everyone else having fun, able to enjoy themselves when all I can focus on is excruciating pain.

Unjust

Emily Ullrich: Unjust…it’s the only health condition that is considered some kind of “moral failure,” or “character flaw.”

Cruel

NOT PC RN: Cruel. We have qualified and educated healthcare professionals who should be treating those suffering from chronic pain yet continue to judge or turn a blind eye or heart to their agony.

Worrisome

Cynthia Covert who blogs at The Disabled Diva: Worrisome. Will I recognize a deadly pain or dismiss it as chronic?

Common

Konna: Living with pain is extremely common. We are millions. I lie every day the past 12 years. People ask me how are you? I say I am fine. I am in pain 24/7. I have psoriatic arthritis and ovarian cancer. But despite all the pain I keep going. I want to teach my son never to give up.

Confusing

Sophie Rebekah: Confusing. Inconvenient. Breakdown-inducing. Exhausting. But there is always light to be found in the darkness.”

Life is a Journey – For People With Chronic Pain, it’s Not a Pleasant One

People often talk about life being a journey. For people with chronic pain, it’s an uncomfortable and very unpredictable journey, full of twists and turns. There are no magic solutions. Instead, we have to learn to cope with the pain. That’s not easy, nor is accepting this type of life, but somehow, we need to do that. We might have lost who we once were, but there is a new version waiting to be found. However, it takes hard work and a huge amount of effort to find that new version.

We Need to Keep Searching for That Light

Living with chronic pain is extremely difficult but I want to echo what Sophie Rebekah said above – there is always light somewhere in the darkness. Sometimes that light isn’t easy to find, so we need to search extra hard.

If you are living with chronic pain, I hope you can find some light today.

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If you live with chronic pain, how would you describe your life? Please leave a comment below.

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People who are living with chronic pain need support and help.
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