Living in the 21st century means we are all slowly becoming more aware of we are all different and that should be celebrated. Along with that, we are more regularly being reminded not to just assume things about others and to be aware that we can accidently offend people if we do. For example, I live with my partner. That term says nothing about the gender of the person I share a home with, therefore if that was the only information you had you wouldn’t be able to tell what my sexuality is. Many of you who have been reading my blogs for a while will know that his name is James and so with that you can deduce that I’m heterosexual, which I am, or you could still think I could be bisexual.

But there are things that we use to describe our experience of brain injury and other chronic illnesses which resonate with us, but they might not have such a positive effect on the next person. I’m not suggesting we start tip toeing around each other and create a atmosphere where everyone becomes scared to say anything for fear of upsetting someone else. Rather I want to help us recognise that there may be times when one of these terms, expressed with good intensions, might get a response that was different than hoped for. If we understand why someone’s feelings are contrary to our own we can still display our compassion by going back and offering and alternative to acknowledge their feelings. 

After meeting some people who said a few terms made them uncomfortable that I personally had never realised before could problematic, I asked the brain injury and chronic illness community to fill me in on others that can feel jarring to them. In addition, I asked for alternative words that we can use too.

Terms which can be annoying and other options you can use.

SURVIVOR – Those of us who have lived through an event which was life threatening may choose to refer to ourselves as a survivor (I certainly do.) However, dealing with the struggles of a brain injury do not stop there. Adjusting to how that has changed their life and left them with continuing challenges can be totally overwhelming. A person can feel like that are drowning and barely surviving. Therefore to call them a survivor can feel like their current struggles are being just brushed under the carpet. 

Alternative – “[enter persons name] lives with a brain injury.” This phrase doesn’t add any positive assumptions to it and is more “matter of fact”. It allows space for the person to decide if they want express any emotions abut their personal circumstance.

SPECIAL NEEDS – Whilst this is a term that is in most places considered politically correct, it can feel awkward for some. Often the word “special” comes with assumptions such as VIP which in this circumstance it doesn’t mean. For some people it can feel like that are saying they want to be treated like they are a celebrity or something, when in fact they want to be treated like everyone else just with certain alterations which help them which their challenges.

Alternative – Requires high support or medically challenged. This makes it clear that it is highlighting it’s a medical issue to be aware of, rather than someone who wants to be treated like a Princess.

DISABLED – The mere fact that the prefix “dis” is used to mean opposite of, not, remove or reverse can immediately feel negative. It can leave people feeling like they are less than an able-bodied person. There is still stigma attached to it which society is only just started the try to remove. I have said before how I personally struggle with identifying as disabled, although I am starting to embrace it a little more now.

Alternative – Differently abled or challenged. These terms tend to promote more open mindedness about that can be rather than immediately just conjuring up images for a person in a wheelchair. Plus it acknowledges that the person CAN still do the task, just that they might do it in a different way than the next person.

SUPERHERO/HERO – These labels are offered with affection, but some people don’t connect with them.  They can feel cartoonish in some cases, making us think of characters who have superhuman powers and strength. that can leave a sense that the ongoing struggles of the person is being diminished. 

Alternative –  “[enter persons] lives with a brain injury. You can go on to compliment them for how hard they have worked at their recovery if you want, but still leave space to recognise their struggles are not over and sometimes they don’t feel strong.

PATIENT – This term is only correct when the person is a client of a medical practise. Some people are fine using it outside of this setting, but for others in can be too clinical and dehumanizing.

Alternative – By phrasing it with the persons name first; “[enter name] lives with a brain injury, you are giving them their identity as a person first.

STROKE OR BRAIN INJURY VICTIM – Unfortunately, particularly for those who have had a stroke, this phrase has historically been used quite a lot. People don’t want to be victimised so this term can be offensive.

Alternative – “[enter persons name] had a stroke.

THRIVER – Another term which is supposed to compliment the person for how they appear to be coping well with their condition. But it’s another one that can overlook the strain that the person is going through.

Alternative – “[enter persons name] lives with a brain injury.” I know I’m repeating the same thing over again, but it’s important not to assume anything about what day-to-day life feels like for a person.

SUFFERER – This immediately sounds negative and implies that the person wants your sympathy.  Empathy is good, but we don’t need sympathy. The latter passes judgement and only offers understanding from your perspective. It makes it sound like you’re suggesting the persons position is awful.

Alternative – “[enter name] lives with a brain injury… I think you’re getting the idea now.

NEW NORMAL – Many use this to describe their status that they have had to adjust to. However, not everyone likes it because of the word “normal”. It implies that everything is fine and things will be going smoothly from now on.

Alternative – Day-to-day status means what a person might experience on a regular basis but it doesn’t say anything about how usual or unusual this might be.

DISORDER – Whilst this word is used in medical terms such as PTSD, it can make the person feels like they have done something wrong. One person described it to me as; “Disorder for me implies that I’m doing things deliberately out of the norm. I am just doing things the best that I can given my condition and learned reactions from similar situations.”

Alternative – To reduce the sense that the the person is wilfully misbehaving, as the word “disorder” does, the word “response” comes across as less emotionally charged and purely factual.

RESILIENT – This word is used to reflect the fact that the person has to put in extra effort each day to be able to put up with the challenges their condition presents them. But it’s not a battle they want to be in, and what is their alternative? Therefore not everyone wants this characterisation because they really don’t feel like they are doing much more that surviving.

Alternative – Recognise that facing their challenges isn’t a choice for them and accept that they are just doing what they have to do to get by.

BRAVE – In the blog post, I’m not strong or brave, I didn’t choose this brain injury , I outlined why I don’t like being called brave. Again this word can make it sound like there is a choice when you are living with a brain injury. To be brave often means choosing to tackle something that the next person would be afraid to. However, we are just playing the hand we were dealt.

Alternative – Just empathise by letting them explain what their experience is like, if they want to. 

WHEELCHAIR BOUND – This is an ableist term which implies the person should be pitied. As one person put it to me, “this wheelchair is what gives me my freedom”, which is a totally different perspective.

Alternative – Wheelchair user.

JOURNEY – Many of us, myself included, have used this word when referring to our lives since our brain injury in our pursuit of recovery. But for those who have a degenerative  or terminal condition it can be distressing as it suggesting you are aiming for a destination, and for them that can only be death.

Alternative – It can be more sensitive to refer to it as navigating their condition.

“BUT LOOK HOW FAR YOU HAVE COME” – Whilst this is uttered as a pat on the back it can make the person feel like they should be “content” with their current position. This can sound like you are saying they shouldn’t complain and just be thankful of the progress they have made.

Alternative – It fine to highlight the persons progress, but talk to them about how they feel about it and what they see as coming next for them. They might feel that they can expect things to continue to improve with the right support, or they might not. Don’t assume anything.

I hope this helps us better understand each others points of view. Again I want to be clear that people don’t need to be so concerned that they dodge talking to someone who has and brain injury to avoid saying the wrong thing. If they notice something didn’t land right with them just ask them why and hopefully these alternatives will help you say the same thing in a way that feels more appropriate to them.

Other articles you may like:

• Why following instructions with a brain injury can be challenging
• How ego makes accepting support after a brain injury challenging
• Why outbursts after a brain injury happen
• Guest post: Quick actions saved a life but still left a brain injury
• How my brain injury can give me writer’s block, a bloggers nightmare