There is so much no one knows about brain injury, but the basics are explained to the family. They always give the worst case scenario! Families are told “you will never be the same” … and they believe that! This prognosis puts you under a microscope and every fault you have at the forefront.
Families and friends are exhausted and begin focusing on all the negatives. They aren’t looking at the leaps and bounds you’ve made over time. They are simply drained of their emotional energy.
They continue to compare you “before injury” and “after injury”. Is the problem yours? Is the problem theirs? As though no one else has faults! Now you have all the faults from the “before injury” compounded by all the faults “after injury, including everything someone else says about you.
You become the problem regardless of how well you do! It’s a fact … no one believes you because you have a brain injury or an old brain injury. Now you’ve become vulnerable and are a stomping ground and target for blame.
- Worse-case scenario
- Actions and reactions are under a microscope
- Friends are exhausted
- Friends focus on negatives
- Friends are drained of emotional energy and physical energy has taken toll
- Friends compare “before” and “after” injury YOU
- All faults become yours
It takes commitment and true love to endure this for the spouses who stay around! Some spouses remain dependent on the injured placing more stress on them. Those survivors are expected to recover and continue as they have regardless of their personal struggle. Because they are dependent on you they may be providing your healthcare professionals a different picture then exists. It’s their reality, and your reality may be quite different. Is your reality important? When was the last time anyone sincerely listened to you?
- Does anyone hear us?
- Who’s reality is it anyway? Yours or Ours? Yours doesn’t matter! YES, IT DOES!
- Are you listening?
Who listens to the brain injured survivor anyway? You will find that whatever you have to say is ignored, especially if a loved one is giving a different account as to how successful you are becoming. This is a frightening thought, but very true!
Initially, your friend includes you in things. They call and you can’t talk on the telephone. You are invited to events but you never show up. You struggle to find yourself. Your friends struggles to understand you. Your family doesn’t give you telephone messages. You don’t remember to call. It’s a vicious cycle.
- Call you. You can’t talk.
- Invite you. You don’t attend.
- Comparison – Before Injury versus After Injury.
- Can’t deal with changes.
- Creates anxiety.
- Depression sets in.
- Depleted of energy.
- Don’t know how to help.
- Can’t deal with their own problems.
- Don’t know how to deal with your problems.
- Don’t know what to say or how to say it.
- Don’t know when to invite and when not to invite.
- Don’t know when to call you or when not to call.
- Don’t know where to go with you or how to get there.
- Helplessness sets in.
- HOPE is what friends always keep. It’s all confusing to friends too, but in a very different way.
What is happening now?
- You are frustrated with your problems. They are frustrated with your situation.
- You are overwhelmed with existing. They are overwhelmed with situation they can’t and want to change.
You are surrounded by family and some friends. Friends only know what the families tell them. They are left out in the healthcare settings. It’s as though their relationships were meaningless. Negative treatment toward friends begin in the healthcare system. They may be treated as though they aren’t important.
Family and friends are discouraged from “hanging in there”. It becomes a financial decision in many cases. Divorces are encouraged. New relationships fall apart quickly. Old relationships fall apart because they are left-out and feel “helpless” or “hopeless”. Exclusion begins early after injury. HIPAA is an excuse to exclude “friends”, but yet it includes “family” that should not be included!
Biological relationships are not always the best relationships for the patient. Parents are not always the best relative, just as the spouse may not be. Best friends are frequently the best choice. Our healthcare does not give the same respect to “friends” as they do “families”. Friends are excluded. Friends cannot visit in many intensive care units.
When you hear the comments “I could have left you”, remember it’s a two way street. “You could have left them”. Don’t take this verbal abuse from anyone, at anytime!
- Getting your Head around Brain Injury (mindwavesnews.wordpress.com)
- After Brain Injury: FIve Tips to Befriend a Long-Term Caregiver (psychologytoday.com)