1. You don't look as if you have had a stroke?
I have heard this many times. The perception of many people is that if you have had a stroke then you should be walking with a limp, or your face should have a droop. Yes, those are some impacts of stroke but there are so many more impacts that cannot be seen. If you saw me then you would not think that I have any disabilities. Yes the people who truly know me see the struggles I face every day. I have heard on TV shows people making a joke such as “You are angry, don’t have a stroke.”. This may appear harmless to many but to stroke survivors it is quite insulting and it is definitley upsetting.
People may think that saying this is a compliment and I am sure it is well meant but the reality is far from that. Many stroke survivors, like me, have days when they are not okay and that they struggle with even simple things. The truth is, when you talk to a stroke survivor, they have had a stroke and telling them that they look OK doesn’t change a single thing about their life! This statement makes me feel that I am lying about having a stroke. Trust me I have seen the scans and I confirm that I have had a stroke. Every day I have to face uncertainty about how I will be, will I be able to cope with what the day throws at me. I am not making these things up for sympathy it is my reality. I ask you why would I do that, why would I make it up? I don’t like people knowing I have disabilities but I don’t shy away from it, I am proud of what I have achieved since my stroke. My imperfections make me the person I am. So I may not look as if I have had a stroke but I have.
2. You must be better now?
I am not a medical person but I do know a lot about stroke. The type of stroke I had was ischaemic stroke this is a clot that travels to the brain and blocks the blood supply in the brain. The brain is not like other parts of the body. Without blood supply brain cells will start to die and they are never replaced. This means that a stroke survivor has parts of their brain that are effectively dead. The brain is an amazing thing as it will try and make new connections to try and recover. However, this is a slow process and may not happen. So, recovery for a stroke can take many years but recovery is not guaranteed. It is 5 years since my stroke and although there have been improvements, I am not significantly better than I was after my stroke. So what you see in me is not a medical improvement but my ability to adapt to my disabilities. I manage my life by taking it easy when days are tough.
3. I understand, I forget things all the time and I get tired
Memory changes are a part of life, as you get older you will forget more. This is simply not the same as what many survivors experience. There are great chunks of my life that I can no longer remember. I forget names all the time and I will forget to do simple jobs. Yes, everyone does this but trust me I am trying my absolute best to remember things.
Stroke survivors (me included) often suffer from neuro fatigue, this is not the same as being tired. Neuro fatigue is an overwhelming feeling of tiredness which can be debilitating enough to stop people from doing everyday activities. Unlike physical fatigue, neurological fatigue cannot be alleviated by taking a rest. So if I am tired simply resting does not help. I remember a time when I was so tired I could not have cared if I lived or died it was that bad. Fortunately, that hasn’t happened very many times.
4. You are too young to have had a stroke
This must be my favourite quote from people. Strokes can happen to babies in the womb so there is no “too young”. A quarter of stokes happen to people under 60 years of age. Once again the person thinks that this is a compliment but it doesn’t feel like that.
5. You always seem fine when you are with me!
The majority of us have an external self. This the version of ourselves we are happy to share with the outside world. It is likely that most of us are more aware of how we come across in a social situation than we are when we are sat at home with our families. Stroke survivors get very good at hiding how we really feel, or what it really takes to get through the day. You might see this version of someone, but you may not see how much effort it takes, how many days it takes to recover and what sacrifices have to be made. I have often said that when you see me struggle it is on a day when it is so hard I cannot pretend that I am okay. Don’t mistake my good days for being well, that is just a day when I have managed to fool everyone. Stroke survivors would make great actors.
6. 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 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. I understand that looking at me I look “normal” (whatever that means). To put this into context on the day I had my stroke I could have died. If the clot had been bigger or travelled do a different part of the brain then the outcome could have been very different. So to minimise anyone’s stroke is just wrong, it doesn’t help them.
7. I know someone who had a stroke and they ran a marathon and got back to work
This is probably an odd one for me to comment on as I have both got back to work and ran a marathon but there is truth in this that applies to all stroke survivors. There will be some element of most stroke survivors that they can no longer do. For example I am no longer able to drive a car and should not ride a bike. I do not read novels anymore and I struggle to watch films and TV shows. Someone once told me that once you have seen one stroke … you have seen one stroke. Everyone’s stroke is unique to them and to make comparisons between them is wrong and is certainly not helpful.
8. … stroke victim…
I dislike the use of the phrase “stroke victim” it seems so negative and final. It always sounds to me that something has been done to me whereas the term “stroke survivor” feels to me that I have chosen to do something and it sounds far more positive. Others will prefer different terms ie strokie, stroke victim but whatever they refer to themselves as, take their lead. It’s a personal thing and that’s important to the person.
9. You, depressed? Anxious, about what?
Depression and anxiety might be some of the most debilitating conditions of a stroke, and both are common in stroke survivors. Depression and anxiety can be caused by physiological changes in the brain but don’t forget that a stroke causes massive changes in your life. There will be times when the feeling of dealing with the impact of stroke is almost overwhelming. I am naturally a positive person and try to smile and have a joke and a laugh but sometimes this is just a façade I put up. Robin Williams summed this up well: I think the saddest people always try their hardest to make people happy because they know what it’s like to feel absolutely worthless and they don’t want anyone else to feel like that.
10. Of course I am still your friend
This is a hard one to deal with. In the aftermath of a stroke many survivors lose friends. There are many reasons for this including the friend not being able to cope with the new person in front of them. The loss of friends doesn’t necessarily happen straight after a stroke, people can remain good friends and then they just drift away. There is no doubt that some stroke survivors can be difficult to deal with, they have a lot to deal with and when facing confrontational situations it makes processing what is happening almost impossible. This tends to lead to the survivor shutting down just to protect themselves. This is something I have experienced, it is never meant as a personal sleight to someone it is simply a coping mechanism. The one thing I have learned is that when you find friends you should cherish them. When they have seen you at your worst and they still enjoy your company then that is something worth celebrating. I know that I am broken but my friends and family love me not despite my imperfections but because of them. To all of you that persevere with me I love you all.
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