Some psychology student somewhere will google this title and be a little confused as to what's it's doing here. I suppose most other people may be confused too.
As a psychology student, one of the many (many, many) things I have learnt about this last year is the fundamental attribution error. Generally, this is the belief (often made erroneously) that a person's behaviour is due to their own opinions and motivations.
For example, there was a psychology study in which participants were asked to listen to two opposing speeches. Both of the people giving the speeches were given a particular topic to speak on that was controversial and didn't necessarily fit with their viewpoint. Despite the participants being told that the speech topic had nothing to do with the speaker's views, they still attributed the opinions in the speech to the person speaking. So the speaker talking about how battery farming was great was viewed as being someone who supported battery farming, despite always buying free range.
This can also apply to everyday things, such as assuming that a sharp reply from someone is because they dislike you maybe, or have little patience. Usually, this isn't the case (hence F. A. error). I'm not sure why people see others like this but it has some negative consequences when people see the behaviour of those with invisible illnesses.
If I was chatting with a friend and then had to say that I was sorry but I needed to go rest, this could very easily be perceived as me being bored with the conversation rather than me being exhausted and having to drag myself away. And it often is perceived that way. Unfortunately in my world, and in the world of many others with invisible illnesses, can't and won't are entirely different. People who have had activities taken away from them due to illness generally would LOVE to keep doing them. Even doctors sometimes get this one wrong and see the patient's describing being unable to do things as not wanting to do things and diagnose it as depression.
Our brains would like to fit things into neat boxes and so will attempt to make the fundamental attribution error, but you don't have to listen.
Showing posts with label invisible illness. Show all posts
Showing posts with label invisible illness. Show all posts
Monday, 7 July 2014
Monday, 12 May 2014
CFS/ME awareness day 2014
Today (12th May) marks the annual CFS/ME awareness day worldwide. The more I meet both people with CFS/ME and those who know them, the more I feel so strongly that this disease needs a much greater awareness. So many people have this illness, young and old that you probably know at least one person with it, and yet so many people are ignorant of it and its lasting effects on both those who suffer from it and their friends and family.
This blog was originally started because I realised that not only did I know nothing about it, but neither did most of my friends and family. Not only this, but I discovered just how difficult it is to find reliable and helpful information about it so that even those kind enough to look up their friend or family member's illness are not rewarded for doing so. So today, to mark awareness day I shall give you a little insight into my life, to add to the multitude of others who are doing the same today.
I have been ill for almost 5 years now. It affects every aspect of my life, nothing is beyond its influence. I first became ill after my GCSEs (which I took a year early) in that the inevitable slump that comes just after a battery of exams never seemed to quite go away. Since then I have both improved and relapsed a number of times with the biggest and longest relapse occurring last January, in my second term of my first year at university. For most of this time I had no idea what was wrong with me, and even now I can say with confidence that I have CFS/ME this doesn't always enlighten people.
When someone asks 'how does it affect you?' or 'how are you?' where on earth do you start? I have had a number of times in between the last relapse and getting a proper diagnosis when people have asked me these questions and there is so much to explain and mourn that I have no idea what to say and instead stayed silent. The best I have managed is 'I am so very, extremely, unbearably TIRED' and even that doesn't cover it.
Getting a formal diagnosis, while mentally wearing and a lot of hard work, has been helpful, not only in terms of formalities (such as applications for benefits) but also for me to have a qualified consultant confirm that all of these confusing symptoms are real and come from a physical cause. It has also made me more confident in telling people.
In an everyday context, every action I make must have thought attached to it concerning how it will make me feel at a later date - can I afford to do this activity in light of what I must do later, tomorrow, over the next few days. My energy is extremely limited and therefore precious. It cannot be wasted. As a young person this is hugely frustrating and limiting and even now I still mourn for the things that I cannot do, and for the freedom I used to have.
I have never been a very positive person, things usually come half empty rather than half full, but I have had to learn to search harder for the positive things. I truly appreciate the valued few who understand enough to ask the right questions, to give me space to rest without fuss or offense and who keep me in their prayers. I have attempted to learn more about God and his relationship with us. I have to admit that for a long while I was bewildered as to what God could possibly do with a weak and useless body like mine and the mystery of how God can show His strength through our weakness is something I have also been searching for. God gives and takes away, and He has given me so much since I last relapsed. I am sure He will continue to keep giving way beyond I can imagine.
I understand how difficult it is to know this illness if you don't have it (which is why I write on this blog) which is why today is so important. Please take some time to read posts by people like me, which often in themselves take up a lot of valuable energy and require great bravery to produce such honesty. Also, if you are interested, I have other blog posts that cover other aspects of the illness that I don't have space to cover here, such as a list of symptoms, practicalities I have had to go through as well as my thoughts and feelings. Thank you for taking the time to read this.
This blog was originally started because I realised that not only did I know nothing about it, but neither did most of my friends and family. Not only this, but I discovered just how difficult it is to find reliable and helpful information about it so that even those kind enough to look up their friend or family member's illness are not rewarded for doing so. So today, to mark awareness day I shall give you a little insight into my life, to add to the multitude of others who are doing the same today.
I have been ill for almost 5 years now. It affects every aspect of my life, nothing is beyond its influence. I first became ill after my GCSEs (which I took a year early) in that the inevitable slump that comes just after a battery of exams never seemed to quite go away. Since then I have both improved and relapsed a number of times with the biggest and longest relapse occurring last January, in my second term of my first year at university. For most of this time I had no idea what was wrong with me, and even now I can say with confidence that I have CFS/ME this doesn't always enlighten people.
When someone asks 'how does it affect you?' or 'how are you?' where on earth do you start? I have had a number of times in between the last relapse and getting a proper diagnosis when people have asked me these questions and there is so much to explain and mourn that I have no idea what to say and instead stayed silent. The best I have managed is 'I am so very, extremely, unbearably TIRED' and even that doesn't cover it.
Getting a formal diagnosis, while mentally wearing and a lot of hard work, has been helpful, not only in terms of formalities (such as applications for benefits) but also for me to have a qualified consultant confirm that all of these confusing symptoms are real and come from a physical cause. It has also made me more confident in telling people.
In an everyday context, every action I make must have thought attached to it concerning how it will make me feel at a later date - can I afford to do this activity in light of what I must do later, tomorrow, over the next few days. My energy is extremely limited and therefore precious. It cannot be wasted. As a young person this is hugely frustrating and limiting and even now I still mourn for the things that I cannot do, and for the freedom I used to have.
I have never been a very positive person, things usually come half empty rather than half full, but I have had to learn to search harder for the positive things. I truly appreciate the valued few who understand enough to ask the right questions, to give me space to rest without fuss or offense and who keep me in their prayers. I have attempted to learn more about God and his relationship with us. I have to admit that for a long while I was bewildered as to what God could possibly do with a weak and useless body like mine and the mystery of how God can show His strength through our weakness is something I have also been searching for. God gives and takes away, and He has given me so much since I last relapsed. I am sure He will continue to keep giving way beyond I can imagine.
I understand how difficult it is to know this illness if you don't have it (which is why I write on this blog) which is why today is so important. Please take some time to read posts by people like me, which often in themselves take up a lot of valuable energy and require great bravery to produce such honesty. Also, if you are interested, I have other blog posts that cover other aspects of the illness that I don't have space to cover here, such as a list of symptoms, practicalities I have had to go through as well as my thoughts and feelings. Thank you for taking the time to read this.
Saturday, 24 August 2013
The Fear of Stopping
Many people without CFS/ME find it difficult to get their head around the behaviour of those with CFS/ME. Sufferers can sometimes be spotted walking around, looking perfectly fine, sometimes for days on end. You may meet up with a friend for lunch who has CFS/ME and they may look as if nothing at all is wrong.
Well, it's not called an invisible illness for nothing, and may in fact be one of the most invisible due to the presence of what is known as Post-Exertional Malaise (or PEM for short).
And what's PEM when it's at home? All it means is that symptoms flare up even more than usual and dramatically out of proportion after any kind of activity. So a meal out with friends may leave a healthy person very slightly tired but nothing more and the tiredness at the end of the meal doesn't get any worse unless you do more. Whereas, a CFS/ME sufferer may go to a meal, feel very tired by the end but then feel 20 times worse the next afternoon. And this feeling worse may last a few days.
So the consequences of activity are hidden. Your friend with CFS/ME going out with you yesterday is not a good reason for being able to go out today - in fact it's the opposite!
Now I don't want people to pity me and fuss, but some little understanding of this can go a long way. Treasuring the time with people with CFS/ME is vital as socialising is something that can only be done periodically.
There is also this fear of stopping. This is because a sufferer can run for a limited amount of time on empty but it always catches up with them (i.e. PEM), just like a short-term bank loan with a high interest rate. It's when you stop that the problem occurs, and there comes a point where you have no choice but to stop.
There are two ways to deal with this fear of stopping:
1. You stop loads, like every 30mins or so. And you do very little. Makes for a boring lifestyle I know, but personally I think it's worth it to actually feel well for most of the time. Someone doing this may be constantly saying no to outings and activities and appear anti-social, but for the vast majority of people, they wish they could join in and pay a high price for their healthy feeling. This is called pacing.
2. You run on empty for as long as you possibly can so that the stops are further apart. This makes for a much more 'normal' lifestyle but only for some of the time. More time must be spent recovering and the sick feeling (understatement here) is very strong. Personally, I think this is a very unhealthy way of managing the symptoms but it can make you feel more normal. Someone doing this may appear to be perfectly normal when you see them and you may wonder how they are sick at all. I think this method is only possible for mild CFS/ME but I may be wrong.
There is also the possibility of an inbetween method where most of the time you do 1 but a special event comes up and for a short while you do 2.
I wanted to write about this because people with CFS/ME are very easily compared and seeing people who follow 2 can make people who follow 1 more weak, when in fact both methods, or even having this condition at all, makes you a very strong person.
Well, it's not called an invisible illness for nothing, and may in fact be one of the most invisible due to the presence of what is known as Post-Exertional Malaise (or PEM for short).
And what's PEM when it's at home? All it means is that symptoms flare up even more than usual and dramatically out of proportion after any kind of activity. So a meal out with friends may leave a healthy person very slightly tired but nothing more and the tiredness at the end of the meal doesn't get any worse unless you do more. Whereas, a CFS/ME sufferer may go to a meal, feel very tired by the end but then feel 20 times worse the next afternoon. And this feeling worse may last a few days.
So the consequences of activity are hidden. Your friend with CFS/ME going out with you yesterday is not a good reason for being able to go out today - in fact it's the opposite!
Now I don't want people to pity me and fuss, but some little understanding of this can go a long way. Treasuring the time with people with CFS/ME is vital as socialising is something that can only be done periodically.
There is also this fear of stopping. This is because a sufferer can run for a limited amount of time on empty but it always catches up with them (i.e. PEM), just like a short-term bank loan with a high interest rate. It's when you stop that the problem occurs, and there comes a point where you have no choice but to stop.
There are two ways to deal with this fear of stopping:
1. You stop loads, like every 30mins or so. And you do very little. Makes for a boring lifestyle I know, but personally I think it's worth it to actually feel well for most of the time. Someone doing this may be constantly saying no to outings and activities and appear anti-social, but for the vast majority of people, they wish they could join in and pay a high price for their healthy feeling. This is called pacing.
2. You run on empty for as long as you possibly can so that the stops are further apart. This makes for a much more 'normal' lifestyle but only for some of the time. More time must be spent recovering and the sick feeling (understatement here) is very strong. Personally, I think this is a very unhealthy way of managing the symptoms but it can make you feel more normal. Someone doing this may appear to be perfectly normal when you see them and you may wonder how they are sick at all. I think this method is only possible for mild CFS/ME but I may be wrong.
There is also the possibility of an inbetween method where most of the time you do 1 but a special event comes up and for a short while you do 2.
I wanted to write about this because people with CFS/ME are very easily compared and seeing people who follow 2 can make people who follow 1 more weak, when in fact both methods, or even having this condition at all, makes you a very strong person.
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