Clichés often heard when dealing with chronic illness

Guest post reblogged from http://brainlesionandme.com/2014/04/14/cliches-often-heard-when-dealing-with-chronic-illness/

When someone is living with a chronic illness, everyone seems to have an opinion.  People will give advice on how to live and deal with said illness, advice on treatments and so forth.  As well-meaning as that they may be, they are often extremely unhelpful.  Therefore, this blog post will look at the more popular clichés that we chronically ill often hear:

  1. “Well, it could be worse..” or “There are people much worse off…” - I think that everyone living with a chronic illness realises this; and as much as the statement is true, it however still does not help us feel any better regarding our own situation.  The statement only really adds to the feelings of loneliness and isolation that already exists in our lives as a result of chronic illness.  In addition, feelings of  suffering and pain are entirely subjective, and therefore you cannot measure one person’s pain against another.  We are still going to be in pain, and the thought of someone else being worse off is not a comfort to us.
  2. “You need to get out more; that will make you feel better…” - This is another cliché that can be especially infuriating to hear when you are chronically ill.  Especially as there is nothing that we would like more, than to be able to get out of the house and do everything that we enjoy such as shopping or socialising with friends as examples. However, we often feel too unwell to go out; and unfortunately there isn’t anything we can do about it.  Stating that we need to get out more just makes us feel worse and more depressed than usual.  So, please refrain from using such expressions.
  3. “Get well soon!” - As much as I realise that this popular expression is often used with the best intentions, it is especially hurtful for people like me living with a chronic health condition.  As the term ‘chronic’ suggests our condition is not going to improve; and that these conditions are ones which we will have to live with for the rest of our lives. It makes us feel misunderstood.  As much as this is a lovely phrase to use for someone with the flu or a broken leg for example, it just leaves us with the thought of “If only!”.
  4. “But you look so GOOD!…” - This has to be the most popular cliché that us spoonies hear from others.  It’s as if people cannot fathom that we are so unwell when we look so normal.  However, it is said that approximately 96 per cent of all chronic health conditions are invisible.  This suggests that the healthy population believe that a sick person should look a certain way and when we fail in living up to that expectation that they therefore do not believe we are sick.  This phrase therefore can be particularly hurtful.
  5. “Have you tried exercise?  That can be very beneficial for illnesses…” - Yes, I understand that exercise can be beneficial for a number of different conditions; for example, mild depression can be alleviated by taking part in some form of exercise as ‘endorphins’, the happy chemical is released during exercise.  However, with many chronic health conditions, it can be very difficult to undertake any form of exercise because of severe symptoms, such as fatigue.  In my case, for example, not only fatigue that can stop me from doing some form of exercise but also the dizziness and the trembling in the legs can make it very difficult to exercise also.
  6. “My friend’s aunt’s cousin has that.  She tried _____ and it really worked for her. Maybe you should try it?” - As well-intentioned telling us other people’s experiences and although you are trying to help us in trying to find something to help, it is important to note that with a number of different chronic conditions and particularly neurological conditions, every person are unique and each case can be very different.  What works for one person will not work for somebody else.
  7. “I know exactly how you feel.  I often feel like that…” - This is fine to hear from other friends who are also battling with chronic illnesses. however, it can be very hurtful and frustrating when other friends begin to compare their recent bout of flu or bad cold to your chronic health condition.  Being in pain and tired for a week is not the same as battling these symptoms for years.  So, please do not tell us that you know how we feel when you have not lived with or experienced chronic illness for yourself.
  8. “I wish I could stay at home all day…” - I find this particular statement very hurtful indeed.  We did not choose to be ill, and trust me when I say we would much rather be out living life, and working like you instead of being stuck at home all day feeling very unwell and tired.
  9. “Are you sure, it’s not just in your head?” - Again, this is a really difficult and hurtful statement to hear when experiencing chronic illness.  When doctors are unable to find an explanation for symptoms, it is automatically assumed that the person must be imagining, exaggerating or even faking symptoms to gain attention.  We get asked this by doctors a lot of the time, so please as friends or family members refrain from suggesting that the problem is simply all in the mind.
  10. “It can’t be that bad?” - The thing with chronic illness, is that it is an experience that you cannot possibly imagine, unless you have had personal experience with it, so again a statement like this can be very upsetting as it trivialises our whole medical condition.  Like the statement above it also suggests that we are making the condition up, and can often make us feel that our own friend or close family member does not believe us, which can add to the feeling of loneliness, isolation and depression that can often be associated with chronic illness, even if it was said with the best intentions.

The best thing you can do for someone with a chronic illness is just to listen to them.  Ask if there are anyways in which you can help them.  Be a supportive friend or family member.  We would really appreciate that more than hearing statements such as those above.

So, these are the few clichés that I have heard during my experience with chronic illness.  What are the some of the statements that you have heard from friends and family?  How did they make you feel?

Please visit the original post to add your thoughts and comments.

trabasack:

New product looking for funding on kickstarter. We like it a lot.

This new video is an interview with the inventor of Geco Hub a new product design that has great potential.

We think it will benefit many disabled people, it is a storage system that will hold many objects at any height on a wall. Useful for wheelchair users, people with a visual impairment or anyone with problems bending and reaching. Or just people without much storage space! (which is virtually everyone!) You can donate to the kickstarter and get your hands on the first ones to be made.

More info here http://livingwithdisability.info/geco-hub-home-for-things-without-a-home/

Anti epilepsy pillows are pillows that you can breathe through in case of a seizure. 
They save lives and are provided free by UK charity "Epilepsy Sucks UK"
Quote from the Charity website:
"THIS IS WHY WE DO WHAT WE DO
'Death from suffocation can result within minutes when a child or adult suffering a seizure becomes entrapped in an ordinary pillow which blocks their nose and mouth. If saved from death, oxygen starvation and brain injury may occur resulting in lifelong disability and dependency'.
Solution: Anti-suffocation pillow!
'Among 15 cases of Sudden Unexpected Deaths in Epilepsy that were witnessed in the community, difficulty breathing was observed in 80% of these cases, where 70% of patients were found in a prone position, suggesting that suffocation contributed to their deaths'.
Solution: Anti-Suffocation pillow!
'Frequent arousals caused by epileptic activity are one possible basis for insomnia. Depression or anxiety, which are common in epilepsy patients, also may contribute'.(Lack of sleep is a well documented seizure triggering factor)
Solution: Reduce anxiety, fear and possible seizures with an anti-suffocation pillow!
'The main health risks come from the worry, lack of sleep and depression that caring can bring. Carers often have to fight and battle for the support they get and this wears you down. All this can lead to high blood pressure and stress-related illness'
Solution: Parents and carers have reported to us that they have slept better since receiving an anti-suffocation pillow!”
The charity are very near to winning a £5000 donation. It is an online vote with a login from fb, google + or twitter.
There are a small grass roots charity of volunteers and this would make a big difference to them
Please VOTE if you can here
https://www.directdebit.co.uk/DirectDebitPromotions/BigBreak2014/Pages/CauseDetail.aspx?CauseId=260

Anti epilepsy pillows are pillows that you can breathe through in case of a seizure. 

They save lives and are provided free by UK charity "Epilepsy Sucks UK"

Quote from the Charity website:

"THIS IS WHY WE DO WHAT WE DO

'Death from suffocation can result within minutes when a child or adult suffering a seizure becomes entrapped in an ordinary pillow which blocks their nose and mouth. If saved from death, oxygen starvation and brain injury may occur resulting in lifelong disability and dependency'.

Solution: Anti-suffocation pillow!

'Among 15 cases of Sudden Unexpected Deaths in Epilepsy that were witnessed in the community, difficulty breathing was observed in 80% of these cases, where 70% of patients were found in a prone position, suggesting that suffocation contributed to their deaths'.

Solution: Anti-Suffocation pillow!

'Frequent arousals caused by epileptic activity are one possible basis for insomnia. Depression or anxiety, which are common in epilepsy patients, also may contribute'.
(Lack of sleep is a well documented seizure triggering factor)

Solution: Reduce anxiety, fear and possible seizures with an anti-suffocation pillow!

'The main health risks come from the worry, lack of sleep and depression that caring can bring. Carers often have to fight and battle for the support they get and this wears you down. All this can lead to high blood pressure and stress-related illness'

Solution: Parents and carers have reported to us that they have slept better since receiving an anti-suffocation pillow!”

The charity are very near to winning a £5000 donation. It is an online vote with a login from fb, google + or twitter.

There are a small grass roots charity of volunteers and this would make a big difference to them

Please VOTE if you can here

https://www.directdebit.co.uk/DirectDebitPromotions/BigBreak2014/Pages/CauseDetail.aspx?CauseId=260

trabasack:

Today is Purple day and about raising awareness of epilepsy.
When my son was 3 months old he had his first seizure. It was totally unexpected, we have no family history of epilepsy and I had never seen a “fit” before.
He was in his cot but I picked him up. I held him in my arms and I ran with him outside into the street. I panicked and had no idea what to do.
Find out the things you should and shouldn’t do here:
http://livingwithdisability.info/tag/purple-day-2013/

trabasack:

Today is Purple day and about raising awareness of epilepsy.

When my son was 3 months old he had his first seizure. It was totally unexpected, we have no family history of epilepsy and I had never seen a “fit” before.

He was in his cot but I picked him up. I held him in my arms and I ran with him outside into the street. I panicked and had no idea what to do.

Find out the things you should and shouldn’t do here:

http://livingwithdisability.info/tag/purple-day-2013/

do you or any of your followers have any suggestions on how to manage pain between a 5/8 without medication? Something drastic has happened in my life and I don't have money to go to a pharmacy at all. Any advice would be beyond useful.

Anonymous

Pain relief without money? Suggestions anyone?