9 things brain injury supporters should not say to a person with brain injury

© Belopez | Dreamstime Stock Photos & Stock Free Images
© Belopez | Dreamstime Stock Photos & Stock Free Images

Brain injury is a tricky thing to understand and respond to. Have you ever said something, you wished you could take back? Or maybe you have said something and been surprised by the reaction you got.

Sometimes as supporters we say and do things best left unsaid. It is hard to know how best to support a person with brain injury and we continue to learn from our mistakes, and our successes.

The inspiration for this post came from a post by Dr Marie Rowland who talked about “9 things not to say to someone with a brain injury”. As supporters we want to do the very best, we care, we want to be helpful. Sometimes there are caring thoughts and deeds that are not so helpful.  Here are 9 things I have heard said that should be changed for more positive and helpful alternatives. Yes I confess that variations of some of these have come from my own mouth at times!

 

1  “I know exactly how you feel”

No we can’t. We never can know EXACTLY how another person feels. We might be able to put ourselves in another person’s shoes to help our understanding, we might have studied hard to learn about what might be going on, we might have been in similar (even seemingly identical) situations, but no-one has had EXACTLY the same experience.

An alternative:

Mary:  “I can’t stop crying today.  None of my friends want to go out with me since my brain injury”.

Supporter:  “I know exactly how you feel; my best friend would not go out with me after she got a boyfriend”

Listen. Encourage Mary to talk further, if she wants to share. Let her know you have heard her experience.

An alternative starter in your own words something like; “It sounds like you are feeling sad about your friends not being around?”  Mary might then agree and keep talking, or she might say she doesn’t want to talk about it, or she may ask you help to work out solutions. Whatever way it goes, Mary will likely feel like you have heard her.

 

2  “I am your friend”

A friend is a friend, a worker is a worker, and a volunteer is a volunteer. Mostly supporters are not a friend. Think about whether you really can be a friend : there for the long term,  through thick and thin, being around when things are tough.

As a supporter this needs careful thought, very careful thought. It may be that you believe it is helpful, and that a person will be less lonely if you become their friend while you are supporting them (as worker or volunteer or another role). Yet it can have a significant impact on a person who thinks they have made a friend, but the “friend” leaves when the support role is finished.

An alternative:

When you want to support, help, care, it can be difficult to work out what’s OK and how much to give. You might need to talk with someone to clearly work out what’s OK (or not OK).

Think about being friendly rather than being a friend.

Think about how you might help the development of other friendships rather than being the friend.

 

3  “Come on what’s my name, you should remember I have been with you a year now”

Imagine you have trouble remembering things, and your ability to learn new stuff is very limited what would be important for you to spend time and energy trying to learn? Memory loss makes prioritising what is remembered important: remembering the names of family and friends that could be useful work. Is remembering the names of supporters who come and go important?

An alternative:

Try and not take it personally.  Think about the cognitive difficulties and the priorities for the person.

Think about that old saying “Call me anything but late for dinner!” Does it matter that your name is not remembered, think about what else you are achieving.

 

4  “You think you’ve got it bad, X is in an iron lung.”

Less extreme versions of this statement sometimes just slip out, without us thinking. “It could be worse…”, “Just think about …”

There’s always someone worse off, we all know that don’t we. Does it help, or add to our understanding and progress to be reminded?

An alternative:

Rather than a reminder of others who appear to be in a more difficult situation think about what  the person has achieved and what could be worked towards. Focus on the positive and strengths rather than comparisons and downsides.

Put yourself in the other person’s shoes. What is it like for them right now? What strategies might assist their situation? How might you help build strength and resilience?

Maybe rather than a reminder of who is worse off, say something that lets the other person know you are on their side, and you hear it’s difficult:

“I can hear it is really difficult for you right now…”

 

5  Let me tell you all about my life.  I have blah blah blah and I have been through blah blah blah. And let me tell you about blah blah blah.

Sometimes it might seem like a good idea to share your story. You might think it helps a person see beyond their own lives and think of others. You might think that is helps build the relationship between you and the other person.

It can also make things complicated and put extra stress on the other person, particularly if they are working hard to follow conversations, or remember stuff, or deal with their own changed lives.

You are there as support for the person with brain injury, not the other way around.

Your story may overload the person who is already managing their own trauma and struggles. The person hearing your story may not feel OK about telling you to stop.  Your story may be hurtful

I remember “Trish” wanted to change her support worker because the support worker shared her life story, including long and detailed descriptions of the births of her 4 children. Trish was upset the supporter had not realised she was not able to have children. The support worker genuinely thought sharing the stories would be a positive in building their relationship.

An alternative way:

Focus on what you are there for.

Be careful and considerate about what you share of your life.

Be aware of the boundaries that keep both you, and the person you are supporting safe.

 

6  “Sure if you want beer (sex worker, drugs, alcohol) I can help arrange it. Yes I’ll do it, just don’t tell your folks.”

Sometimes as supporters we believe we see more from the outside looking in and think things should be different.

We might think:

family are being overprotective,

the person with brain injury should be able to make their own decisions

the person is over the age of consent and therefore have individual rights.

Going against the team which includes family however strongly you feel is not a good idea. Often there will be safety or other factors you are not aware of.  The family as a whole will be coming to terms with what is happening and being juggling all sorts of thoughts and emotions we as outsiders might not see.

An alternative way:

I have talked a bit about family when discussing Helen Sage’s book “Flower Between the Cracks” (highly recommended, a fantastic book)  in particular about family being there for the long haul, there before we came on the scene, and there after we leave.  Generally better to keep the thought “Family knows best”.

No matter what we think, no matter how much we want to take a stand with the person with brain injury – it works best when you work with the whole family, not just the person with brain injury.

If a family caregiver says NO then better to work with the family AND the person with brain injury to come to a solution that works for everyone.

If there are professionals involved let them know so they can help work with the family if needed

 

7  “Well if you ask my opinion you should do blah blah blah”  OR

 “Well if you want my advice give up X and try Y  ……”  OR

“I don’t agree with what the Doctor said, you should  …”

Giving advice, offering alternative treatments or strategies; it is so tempting, particularly if we really believe we have a better way. It can also have negative effects when it is not our role, not our expertise and we do not know the full story. For most of us in a supporting role we do not have all the information and background to safely provide this kind of advice.

Think about the rules for giving advice; we should give advice when we are asked for it, PLUS when we are qualified to give the advice PLUS it is our role.  Check before you decide to give advice.

 

An alternative way:

If you really believe you have something valuable –pass it on to the Doctor or therapist or your supervisor.

If you are asked for advice; and you are not qualified to give it, or it is not your role. Discuss this with the person, explain it is not your place, and remind them of who they could speak to, or assist the person make contact with that person.

 

8  “Yes I agree with you – what the Doctor (OR Hospital OR Therapist OR insurer etc) did was not right.”

It is so easy to slip into joining in the blaming of others, particularly when it can be so emotional, and when people’s lives are affected e.g. A family member telling us how a doctor or hospital made the situation worse.

Often we agree with the blaming because we want the person telling us their experience to know we believe them, and share solidarity with them. The blaming can maintain a negative focus on the past rather than working towards a future. Blaming can mean a person gives up looking for alternatives because they place responsibility elsewhere.

An alternative way:

It is often more helpful to listen and acknowledge you have heard the person. This does is not the same as agreeing. Then focus on what can be done to work towards changes and more positive outcomes in the future.

If you are concerned that there is an issue that has not been addressed talk to a professional involved or if you have a supervisor / manager speak to them about it.

 

9  “You did it yesterday why can’t you do it today, you are just not trying.”

“You can’t be tired yet we have only been working for a couple of hours.”

“Don’t be so selfish. Why don’t you think about someone else for a change?”

These are all examples of statements made that personalise outcomes of what is most likely a result of brain damage.

An alternative way:

Remember “It’s the brain injury talking”

Learn about cognitive impairment and how this might impact on what is occurring. In the above examples it is more than likely cognitive fatigue, memory loss, and egocentricity rather than deliberate behaviours.

 

I would welcome any additional strategies or examples you might have.

This Post Has 4 Comments

  1. Pam Vinson

    Thank you for this article! I’m so tired of apologizing for my memory loss, and hearing “oh, I know how you feel, sometimes I can’t remember anything”!!!
    I’m SICK of hearing that.

    1. Melanie Atkins

      Hi Pam, I am so sorry this has taken so long to come back to you. This is such a great example, thankyou for sharing it with us. I hope both the article and your example help people to think about what they say. Melanie

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