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Misunderstood: The Experience of Chronic Pain - Moving Towards Better

Last updated: 05-12-2020

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Misunderstood: The Experience of Chronic Pain - Moving Towards Better

“I’m just a soul whose intentions are good Oh Lord, please don’t let me be misunderstood.”

Each of us has a story. Each of us is living our story. Over the past few years mine has been less than stellar and has, in fact, caused massive inner turmoil. As I make that statement, I know there are some who would shake their heads, thinking that I should just get over it, that I’m using my experiences as a crutch. Flippant comments and opinions hinder the healing process. And that, my friends, is where misunderstanding takes root.

I have never in my entire life felt as misunderstood as I do at this time in my life and I believe if I feel this way, there are many more who do as well. Chronic pain or long-term recovery can be misread and can breed a level of judgement that can cause further emotional deterioration to the individual living with it. I believe one of the inner cries of a person who has been dealt a physical blow is to be seen and understood.

When I fell on the back of my head sustaining a “mild” concussion, I listened to the ER doctor tell me that I might have a very minor concussion but more likely mild whiplash and the prognosis being that I’d be back to normal within 7-10 days. Fast forward a year and an MRI later. A micro-bleed and bruising were still visible a year later and I could finally breathe, knowing that it wasn’t all in my head (even though it truly was).

I spent countless hours educating myself, trying to explain to others, all the various ways a traumatic brain injury had affected me and much of the time I was met with blank stares or patronizing comments. Of course, I have friends and loved ones who were supportive and caring, but the over-arching experience was one of constantly feeling misunderstood.

What I found was that if people don’t want to understand, there is no amount of education or explaining that will make a difference and then it’s a matter of deciding how to proceed with a relationship. What I learned was fascinating:

When someone is experiencing chronic pain, it is utterly exhausting and so disheartening. Sometimes the effort it takes to get through a day can be overwhelming, the feelings of guilt and uselessness ever present. Pain is one thing but the mental strain it generates is a whole ‘nother animal. Mental wellness can be elusive and the sense that a friend or loved one has no interest in understanding can be devastating. Someone who has been a high performing individual and is suddenly unable to function at that capacity can truly tank emotionally. Despair and a desire to disappear into the ether is not uncommon. It doesn’t mean they have any intent to hurt themselves, just a lack of hope in knowing how this will all turn out.

The truth is, it’s just as hard for us to accept and learn a new way of being as it is for our support systems to try and figure out how to help us! For people who want to offer love and support there are a few key considerations that can make a difference for all involved.

As a caregiver, a loved one, or a friend, you play a crucial role in supporting the well-being of your injured or pain-filled friend. Extravagance is not required, only a wide-open heart, willing to participate and dive into the darkness alongside us. Go on the journey, look for ways to provide peace in the storm and ensure that you are looking after your own emotions (loss and grief are common) because it can be a bumpy ride for you, too. 

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