Guest Post by Shandra Carlson
“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.
- Like how my personality changed.
- Or how I couldn’t read books.
- The migraines and foggy brain. Oh, the fog.
- How sometimes I could not pull words out of my head for love nor money.
- The utter and complete exhaustion just from normal life.
- How concussions – or more particularly post-concussion syndrome – are as individual as each person experiencing one.
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:
- Don’t try to explain yourself to people who aren’t invested in your well-being.
- You find out really fast who your friends are because they will allow you to repeat yourself as many times as is required, based on where your brain functionality is functioning in that moment.
- Trying to establish a new normal is nigh impossible because it’s like a moving target. No two days were the same.
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.
Ways Family & Friends Can Help
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.
- Extend enduring patience. They did not choose this.
- Offer empathy, not pity or sympathy.
- Refrain from clichés, just don’t go there. (ie “What doesn’t kill you makes you stronger.”)
- Curious questions to learn about the injury or chronic pain. Research until you know it inside out. Study concussions – or fibro – or cancer – or depression – whatever it is.
- Don’t presume to know the answer or to offer it without being asked.
- Understanding that life may not be the same and accepting a new way of being is difficult for them.
- Patronizing or judgmental comments are not helpful. Stop it. Don’t add to the cycle or to the guilt we already feel.
- Ask how you can best support us. Don’t assume and don’t get mad if we can’t receive on your terms.
- Know that progress can turn into regression and that reacting only magnifies symptoms.
- Hold space and listen.
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.