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" STAGES OF ILLNESS " - WHO THOUGHT THESE UP ?

vittorio profile image
23 Replies

WHY OH WHY DO SO CALLED EXPERTS GIVE " STAGES " OF A PARTICULAR ILLNESS ? , - ALL IT DOES IS ALARM THE PATIENT EVEN MORE , IMPLYING THAT THE NEXT " STAGE " IS " SERIOUS " , AND THE NEXT " STAGE " IS GETTING NEAR YOUR LIMIT , AND, THE NEXT " STAGE " INDICATES DEATH IS NOT FAR AWAY ETC , ETC = GEE THANKS ! ........THANK GOD , NO ONE HAS EVER " COOKED " UP THESE ALARMING SO CALLED " STAGES " OF MY RESPIRATORY ILLNESS, - I DON'T WISH TO KNOW ....AND MORE TO THE POINT - WHAT IS THE EXACT " DEFINITION " OF ANY PARTICULAR " STAGE " REACHED ....? AS IN MOST THINGS IN LIFE , WE ARE ALL DIFFERENT ,SO THEREFORE IT FOLLOWS THAT ANY PARTICULAR " STAGE " MAY BE PERTINENT TO ONE PERSON , BUT UTTERLY MEANINGLESS TO ANOTHER ! = N...EG I KNOW A PERSON WHO WAS TOLD WITH GREAT SOLEMNITY , THAT THEY WERE IN " ..- WAIT FOR IT FOLKS ! .....=..... THE FINAL STAGE OF CANCER " ......................................THAT WAS ELEVEN YEARS AGO - SO MUCH FOR THESE BLOODY " STAGES !!!!!!!!!!!!!!!!!!

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vittorio profile image
vittorio
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23 Replies
sassy59 profile image
sassy59

I agree vittorio and Pete has no idea what “stage” he’s at, I hope he is never told.

Wishing you well xxxxx

Stumpy55 profile image
Stumpy55

Hi vittorio, I don't think the 4 stages are meant to stress patients out as such, it's putting the stages in order of mild, moderate, severe and very severe. To let the patient know how serious the illness progresses and what you need to do to slow the progression down with the right treatment and to give up smoking. I know what your saying and yes a lot of people do panic but also there are also a lot of people that need to know so they can get their affairs in order with their families. I have very severe Emphaseama and started years ago with mild copd, but I have coped better with the knowledge of what goes with the illness. Plus you are better prepared long term. I wish you well ✋️😊

O2Trees profile image
O2Trees

But we know that copd, and cancer for that matter, affect people very differently, whatever stage they are at at any particular point. I would hate not to know what stage I am at - knowledge is power as for as Im concerned. And as with your friend who has survived 11 years with cancer, people can live in so-called 'end stage' copd for years and years which is one reason why they have stopped called it that, and refer to it as Stage 4. A few less knowledgeable GPs may still use the old terminology though and it's not helpful.

If you really don't want to know the stage you are at, then tell your GP, respiratory nurse and/or consultant - they should all understand; we are all different in the way we deal with our conditions and it's perfectly valid for you to let them know how too much knowledge makes you feel. Self-management is about knowing what works for you. :)

corriena profile image
corriena

My specialist never mentions stages of my illness just that the damage to my lungs is sever. I was told by a previous dr that i had the lungs of a 103 year old i was about 38 at the time. I dident pay much attention to it. My next consultant said these things are nonsence as what is relavent is how i feel and what i am capeable of. Some people are as unwell as they are told they are. Unfortunately i have found this to be true of some people.

hypercat54 profile image
hypercat54

I think it is up to the individual how much they want to know. Personally I need to know everything including stages etc. You are different. No approach is incorrect, it's just personal preference.

Annie31 profile image
Annie31

As Hypercat says, no one approach is the right one. I personally don't want to know stages, ignorance is bliss as they say! I would dwell too much on whatever I was to!d and it would take over my life! I have dealt with anxiety issues all my life and I don't need any more!

GLITZY75 profile image
GLITZY75 in reply to Annie31

I think that is a valid point. I don't have COPD, my mom did. It seems to me that anxiety is a big hurdle for a good many COPD patients-- and to some degree makes them worse, but when anxious it is clearly more difficult to breath-- anxiety can take over your life. And as someone mentioned, many patients live quite long with stage 4/end stage.

Caspiana profile image
Caspiana

Hello vittorio . 🌷

It is very depressing isn't it to be put into "stages" . I well understand not wanting to know. I think sometimes though it is necessary for SOME of us to know. Take for example me. It is because I have end stage lung disease that my case was brought before a committee and I am now , hopefully and thankfully awaiting a lung transplant. As cruel and as sad it may seem, I had to be classed (with tests to back it up) this way to fall into that "bracket".

In the end though, we are all people facing different challenges and these "stages" do not define who we are, or where we've been, or where we are heading.

I'm not sure I'm making sense. 😊 I hope so anyway.

Sending warm wishes.

Cas xx 🌞🐞🐝

GLITZY75 profile image
GLITZY75 in reply to Caspiana

I think that is a good way to put it. I think my mother felt the same way. She was not really aware of the stages so much until she reached the advanced stages which was about 7 years ago, and the reason the doctor told her was to put out the possibility of a lung transplant, which she decided against-- because at the time-- the doctor told her most patients live about 5 years with it. She was very afraid of her quality of life. The doctor told her that most COPD patients only live around 10 years from diagnosis-- which from all I can see is mostly not true.

joyce74 profile image
joyce74

I don't have any wish to know, don't ask when I have my annual test though nurse stated last time that result was almost the same as time before. That will do for me, I go off how I feel.

Dedalus profile image
Dedalus

Well said Vittorio - I absolutely agree

Stumpy55 profile image
Stumpy55

I respect all of your views, we are all different, and have different needs, but at the end of the day we have to except what is and deal with it best way we can in our own unique way. It's good to talk ✋️😊

jeancosfo profile image
jeancosfo

Couldn't agree with you more, Vittorio.

I remember being asked to go to my GP for a spirometry test about 2 years ago. I always see the nurse for that test and she is lovely, always encouraging. Unfortunately, when I arrived at the surgery, I found out the nurse was on maternity leave and I was booked in to see a certain male doctor (it's a group practice) who has all the tact and diplomacy of a rottweiler. There was no eye contact, no niceties, didn't even give me a chance to get my coat off. After breathing twice into a cardboard tube that he'd thrust at me, he turned and started tapping on his keyboard. Then without turning to look at me, he growled, "Have you thought about the end?" I just sat there with my mouth open. He then turned to me and impatiently raised his voice, "Well, do you wanna be hospitalized or what?" I muttered something, can't even remember what, then I walked out, went home and cried.

That was 2 years ago, I am now under the care of respiratory nurses and they are brilliant. Needless to say, if I do have to go to my GP surgery, I always make sure I see anyone except him, even if it means waiting a week.

Maybe some doctors should be taught about the power of positive thinking. X

vittorio profile image
vittorio in reply to jeancosfo

...Cor blimey ! - as they say - what a dreadful "Doctor " - what became of the "Hippocratic Oath " = " First do no harm " , he took, when first being qualified ? - or is he ? ....with a dreadful manner like that , he should pack this game up and take up knittng for a living ! ...avoid this creature like the plague ! .....all the best Jeancosfo !

Caspiana profile image
Caspiana in reply to jeancosfo

I wish there was an "ANGRY" button on here. What a thoughtless, unprofessional, mean individual. He will get his come uppance!! 😡 I'm sorry that happened to you jeancosfo . *Hug* xx 🙋🐕

jeancosfo profile image
jeancosfo in reply to Caspiana

Thank-you for your nice reply Caspiana. Happily, it's a group practice so if I need to see a doctor, I always ask to see one of the others. X

Caspiana profile image
Caspiana in reply to jeancosfo

Well thank goodness for that. I'd imagine no one is lining up to him. xx 😑😒

GLITZY75 profile image
GLITZY75 in reply to jeancosfo

I am really sorry you had to deal with that. I agree some doctors have a better bedside manner than others.....but that is plain awful.

mellyme profile image
mellyme

Whatever you do, avoid the heck out of Google, when dealing with this issue.

Symes profile image
Symes

I know how you feel. My wife was diagnosed with Stage 4 cancer nearly 4 years ago in October 2014 (having first seen her doctor about a lump in March 2014) - she’s still with us and fighting! For her, terminal has not been so terminal.

I thank every day for that. Some days my wife does genuinely love being alive. Other days she can be in a lot of pain and wishes it would hurry up and be over. But more of the former recently thankfully.

Me, well I have a various alphabetic list of problems that could just as easily knock me off this mortal coil today, if they so wished (Asthma, Bronchiectasis, COPD, Diabetes, Epilepsy, and Chronic Obstructive Sleep Apnoea).

But I try not to think about stages, or any of that stuff. It is what it is. I live as long as I live. If I die tomorrow, ok. If I live another 40 years (I’m only 42 now) then great!

Caspiana profile image
Caspiana in reply to Symes

Hello Symes .

It's when I read situations like yours, I remind myself to pack in the complaining and to keep going. I was very touched by your reply and send you and your wife my very best wishes.

Thank you for sharing.

Cas xx 🍀

Symes profile image
Symes in reply to Caspiana

Thank you Cas, that means a lot xx

GLITZY75 profile image
GLITZY75

I guess there is probably a better way to term it. My mom had COPD for quite a long time. She was diagnosed over 13 years ago, but first had symptoms about 3 years before that-- I am guessing that she probably had a milder form a few years before the first symptoms. it seemed as though they did not talk much about stages until she hit the later stages.

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