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I don't know if any of you have experienced similar problems but over the years I had been very annoyed and sometimes rather hurt when people say, "Oh, and you look so well", when you are trying to explain to them how unwell you are. I have a fair complexion and tend to look healthy but obviously, underneath I can very sick indeed. Even GPs can be unkind and only the other day when I was seeing a locum about a change in my MS symptoms he was quite dismissive when I told him I have bronch with PA. He even went so far as to comfirm what I said by trawling through my notes. Needless to say, I spoke quite plainly to him.
I have much the same bother with my MS, people look at me with disbelief when I tell them I have the disease, they seem piqued that I am not in a wheelchair with a shaking head.
I have got to the stage where when people ask after my health, I say, "Oh fine thanks" or "Oh as ever". Even my own family can be quite cruel and my sister-in-law has tried to suggest that I am neurotic just because I have so many illnesses. What she doesn't know is that my co-morbidities are all linked, they are all auto-immune disorders and of course, bronch and tendency to develop it is an immunity problem.
My wife and my son often get very angry because they know of the many nights I am up and bout during the night, coughing, retching and bringing up blood. Last night was particularly bad and I'm sure the rest of you suffer similarly.
I once mentioned this bitterly to a GP who was also a close friend and he said that it was just a cross I had to bear and people can be cruel. I also get very displeased when I am told by so-called professionals that bronch is not really all that serious because it is basicallly a form of bronchitis that can be dealt with quite easily. We all know that is simply not true. I remember my mother telling me that when I was having my lobectomy back in '73 she told my surgeon that she was relieved that I didn't have one of the bad diseases like TB or lung cancer. His reply stunned her, he said, "madam, your son has a killer disease that is not to be taken lightly". She never forgot that and whenever she told her friends and aquaintances that I was unwell they'd always reply, "and he looks so well" or "you wouldn't think it to look at him". It often moved her to tears and she gave up a number of so-called friends because of it.
I once went to a GP with a really bad infection, I was feeling awful and I was coughing up phlegm and blood. As usual I was 'healthy looking'. I had not seen this guy before so I went into some detail with him and he looked at me and told me that I had been wrongly diagnosed and that I should not have had the lobectomy because I was a healthy young man. This was without so much as a cursory examination. I finally lost it when he handed me a leaflet that told of how lots of exercise and long walks can prevent 'minor' chest infections. At the time, I was a local badminton champion so needed to lectures on exercise. He also told me that I should stop smoking even though I have never even tried it and would never think of doing it.
I could feel tears welling up in my eyes and finally I lost my temper, I called him all the names under the sun (no profanity, if you use that, you lose the moral high ground) and I made sure that everyone heard me in the waiting room. Finally I banged his desk and left the room slamming the door behind me. He was lucky, very lucky that I didn't punch him out.
Nowadays, when I come across a doctor like that, I mark his or her card immediately and make sure they read the relevant notes.
Now you might think that I am a beligerent old codger but trust me, I am not. I am simply raging against the medical machine and I'm sure that you all have similar stories to tell and please share them with us.
Sorry to rant on but today I feel particularly bad and sometimes my memories haunt me. Keep well and carry on!
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