I recently received an email from a brain injury survivor asking what is the best place for a brain injury survivor to live. Where can you eliminate contact with mean or ignorant people? Where can you find only doctors who “get” what a brain injury survivor is going through. I heard a desperate exasperation in her voice when I read ” I’m willing to relocate WHEREVER…”
I get it. Many, if not most, of us have wondered the exact same thing.
I wrote a response, then decided this was worth writing an article about.
It’s not going to come as a surprise to anyone when I say people and professionals in any city can be hurtful (knowingly or ignorantly) with brain injury survivors. Unfortunately, that’s not uncommon.
There are pockets of discouraging and undermining voices wherever there is a brain injury survivor. As we each work through recovery, it can be necessary for us to make adjustments to the way we interact with others.
Each survivor can learn what they can and can’t handle and make adjustments to create the best environment for themselves. Here are some things to keep in mind.
1. Geographic Considerations
It’s going to depend on each person. Some people will want a metropolitan area with access to lots of resources. Some people will want less stimulation, more nature, and a more calming area. They won’t mind driving for their doctor’s appointments. For most of us, we will also want to be close to a support group of family or close, trusted friends.
2. Family, Friends, and “Friends”
Sometimes boundaries are necessary. We may need to put our foot down about how much time and where we spend socializing. We may need to resign from commitments that we fulfilled before our injuries. We may need to lovingly, but firmly lay down boundaries about topics to be discussed when talking with others. If someone keeps bringing up a sensitive subject related to our recovery, we let them know that we do not want to and will not discuss it.
Sometimes we end up in a very difficult situation where we need to remove someone from our life. When someone will not accept the boundaries we want to establish and continue to make us feel guilty, or not valued, or unimportant, we may not have another option.
I think it’s important to establish a few trusted people to have permission to be very open with us, even when it might not be what we want to hear. It should be someone who loves us and who we trust to help us out, no matter how uncomfortable it might make us.
These trusted people can be especially helpful when we are considering severing ties with someone or making a dicision about a doctor. They can provide us a sounding board for evaluating our decisions. They can help make sure we think things through before making an impulsive decision. And many of us are given to impulsive decisions after a brain injury.
How we approach each relationship is a personal one.
3. Doctors
Relationships with doctors and other healthcare professionals can sometimes be trickier. These relationships might not have the emotional components that family and friend relationships do. But their words and opinions weigh heavily on our own perception of our recovery.
A doctor’s words of “you’re just making these symptoms up” can sometimes cut us off at the knees and question our own perception of what is going on.
A doctor’s words can make us abandon any hope for improvement.
I know, because it happened to me early in my recovery. I watch many survivors express these feelings after an ignorant or insensitive doctor makes an off the cuff comment.
Another challenge with doctors is that we can also feel committed to one once we start to see them. And that can make it harder to look for a better one.
Doctors are educated. They spend years and years learning about the human body. Add a few more years to that if they are a specialist. Who are we to question their professional opinion?
You are! Gosh. Darn. It! You are the survivor! The only person who lives your injury from the inside day to day. You can voice an opinion about how your treatment is going.
The thing is, you don’t know you have a bad TBI doctor, until you know you have a bad TBI doctor. But once you do, you can take action. We can speak up, ask for clarification, and look for a second opinion. If you decide it’s necessary, start looking for another doctor. If you decide you want to go down that path, you can check out this other article I wrote with resources and a worksheet to evaluate potential doctors.
Final Word
Wherever is best for you, remember you will find people across the spectrum from supportive to naysayers nearly everywhere. Friends, family, and doctors can fall into both groups
Ultimately, we are each responsible for speaking up, advocating for ourselves, and doing what we can to change our situation. It sucks, and it shouldn’t be that way, since we’re already in a difficult situation. But at the end of the day, no one else lives with our injury. Those who want to be supportive can’t help unless we explain (sometimes multiple times). And those who add to our burden will continue to do so until we take that power away from them.
Thank you for writing this article. For years I have been recovering from two disabling vanpool accidents with neck, back, brain stem injuries, disabled from working as an editor in highly technical space field, 13 years later miraculously recovered most of the physical symptoms, yet still struggle with thinking processes alone, my husband passed away and no children. I just became aware that my cognitive problems are related to trauma and now my journey starts to conquer those sumptoms.
Thank you for a wonderful & helpful article. My heart goes out to Laurel.
https://shorturl.fm/Ks7c6