No one is perfect and I doubt anyone reading this blog (me included) has seamlessly moved through life without saying something with good intentions that has actually hurt someone’s feelings. However, communication is everything so we wanted to let you know the common responses to stroke in younger people that can be a little irksome!
We asked members of the younger stroke community what not to say to a stroke survivor:
“What is something that people say when they find out you have had a stroke that you wish they wouldn’t?”
Here is what they had to say:
1. “You are too young to have had a stroke”
Sounds complimentary – right? Saying that someone looks young is usually seen as a good thing, so why is this number one on our list?
Younger stroke survivors hear that they are ‘too young to have had a stroke’ A LOT and it gets old- fast!
The stigma that stroke only happens to older people is not only factually incorrect, with approximately 25% of stroke occurring in the under 60’s, but also dangerous! In 2019 Different Strokes and Consumer Intelligence did a poll of the general public that showed 84% of people still believe that stroke only happens to the elderly. This stigma means that many younger survivors suffer with delayed diagnosis and a lot of stroke services are not set-up to deal with the unique challenges faced by having a stroke at a younger age.
In fact no one is too young to have a stroke – strokes can even occur to babies in the womb.
2. “You don’t look like you have had a stroke”
What does looking like you have had a stroke really mean?
Yes, stroke can have an impact on someone’s physical appearance; one side of the face may droop and one side of the body may be weaker or paralysed. These effects vary and don’t always happen to every survivor. Physical changes can cause huge self esteem issues for members of the stroke community. Saying someone looks like ‘they are having a stroke’ has been an ableist insult all too commonly used in the media and casual conversation, without thought to the impact that this may have on stroke survivors and/or their families.
Saying someone doesn’t ‘look like they have had a stroke’ may sound like a compliment, but the truth is that every stroke looks different. Even people who ‘look fine’ may experience more physical symptoms when they are tired. The fact is, if you are talking to a stroke survivor- they HAVE had a stroke and telling them that they look OK doesn’t change anything! This statement can feel invalidating and for many the invisible consequences can be as devastating as the physical.
3. “You are not working hard enough to get better!”
We are not sure this needs much explanation, other than just don’t say it!
Working hard at recovery is all relative. For many stroke survivors recovery is a long and arduous process. For others they may reach a point where they have progressed as far as they can in certain areas. Recovery is not linear, but instead a life-long journey with some wins and some losses along the way.
Most stroke survivors are working super hard every day to overcome the challenges they face and in ways you might not even realise. It is usually best to be encouraging or keep this comment to yourself!
We will explain more about why ‘getting better’ is a tricky phrase next.
4. “Are you better now?”
A stroke is a brain injury, it is not the same as a common cold or virus. It is usually a long-term condition which requires a level of adaptation and management. Some stroke survivors make a rapid and speedy recovery and return to their pre-stoke self. However, the majority of stroke survivors sit somewhere on a spectrum that starts with being unable to do almost anything they once did and for most people ends with being able to do most of what they once did, but with some form of management.
We hope that by now you have come to realise that a stroke and the impact it can have is different for everyone. Where someone is in their recovery will vary greatly and how this impacts their life will vary a huge amount too. Most survivors don’t ‘get better’ so to speak and instead they learn to live with and manage the long term effects of a stroke.
5. “ I relate because I get headaches and feel tired too! ”
Having a headache or suffering from migraines can be life affecting and hard but it is not the same as having a stroke. Feeling tired is not the same as neuro-fatigue which is often a devastating long term effect of stroke.
We appreciate that you are likely trying to relate to the stroke survivor you are talking to or demonstrate sympathy for what they are going through, but it just feels a bit invalidating.
6. “I know someone who had a stroke and they ran a marathon last week/ got back to work/ can stand on their head etc.”
The intention behind this can be good – you want to share a story of hope and triumph! These stories can be useful to hear sometimes. However, total recovery is not possible for everyone and comparison can be the thief of joy. What feels like an achievement will vary from person to person. For some survivors walking with a stick across the living room will take as much training and effort as running a marathon.
7. “You always seem fine when you are with me!”
Most of us have an ‘outside’ self; the version of ourselves we are happy to share with the world. It is likely that most of us are more aware of how we are coming across in a social situation than we are when we are sat at home with our nearest and dearest. Sometimes those of us living with chronic or long term illness can get very good (rightly or wrongly) at ‘masking’ how we really feel, or what it really takes to get through the day. You might see this version of someone, but you might not see how much effort it takes, how many days it takes to recover and what sacrifices have to be made.
8. “Could have been worse! It must have been a mild stroke!”
A stroke is a major health event, and is usually traumatic and life changing. To then class this traumatic event as ‘mild’ or say ‘it could be worse’ is, at best, misguided and at worst insulting. Unless you have access to the brain scans and can understand them, perhaps it is best to leave categorising the type of stroke to the professionals.
9. "You picked a bad/great time to have a stroke"
We are about a million percent sure that no one chooses to have a stroke and we have yet to hear from someone who pencilled the date in their diary in advance! Insinuating anything like this even though it is intended as a ‘hilarious joke’ is a bit too close to the bone. It isn’t a ‘choice’, and we can assure you there is never a ‘great time’ to have a stroke. Come on, you can think of something funnier and non-stroke related it you really try!
10. “Stroke Victim”
At Different Strokes we dislike the term ‘stroke victim’. It implies a lot of negative things and feels quite final. We have used the phrase ‘stroke survivor’ since 1996 and find it to be both truthful and that little bit more positive. Survivors are living with the effects of stroke, but they shouldn’t be defined by it.
However, this choice over wording is unique and we tend not to ‘tone police’ how people refer to themselves. Everyone has their own term of choice, whether that be ‘strokie’, victim or survivor and we tend to follow the lead of the person who has had the stroke and you should too.
There it is! Some common responses to avoid. But remember you are only human and if you do mess up just acknowledge it and if your intentions were good try not to feel too bad.
Here are some things that you might want to say instead:
“Thanks for sharing that with me, how is recovery going?”
“ Are you comfortable talking about it?”
“ Is there any way I can support you?”
“ Is there anything you want me to know?”
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