"You're looking well, how are you?"

Chest and lungs
1

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! 

2

Hi supercough, I understand how galling it is to be so misunderstood particularly if your family don't understand either.  I am in the same boat although the doctor I have now is wonderful and when I passed him in the corridor at the surgery on my way to physio he said 'hello' and asked me how I was, he didn't stop to talk but just tro be recognised is a step in the right direction.  My family don't understand either, I am just 'mum' always there, always ready to prepare a meal or play with the children, they never think to ask how I am or look on the calendar to see which medical professional I have seen this week.  But hey, I have my car and can get out and the sun is shining and it's warm so bite the bullet and get on with life and keep smiling, nobody likes a grumpy person.  Take care, Lizzy.

3

You are so right on this one. The majority of people do not understand how wretched and exhausted you feel.

Hopefully, you'll be feeling a little better soon.

4

You have a right to a rant like anyone else my friend. i like you have the same problem, internal illness that only manifests itself when I have a fit of coughing or cant breath, it's only then that the outside world realises that maybe all is not as well at THEY think it is. The fatigue factor is partiularly gauling as people often think youre swinging the lead when in fact you couldnt swing a lead even if you tried hard, very hard in fact.

My one saving grace is that i not only have a family who have witnessed the full horror of my illness, but a doctor who actually suffers from it himself and can at least understand how im feeling.

All we can do is carry on regardless and keep pushing that rock uphill.

 

5

...I feel for you, I had a very bad episode at a funeral the other day, most embarrassing and a friend, who knows about my condition asked, had I a tickle in my throat? (Ugh)

There is a general lack of understanding about the condition, even when you explain, people don't hear what you are saying or translate it into something that they would like to hear. I don't expect a lot of understanding these days and try to accept people as they are, not perfect, sometimes unthinking, sometimes cruel without meaning to be, and also unexpectedly, sympathetic when you least expect it.

This weather hasn't helped this week;

Has anyone any advice about whether a dehumidifier would help?

With Every Blessing,

Lesley

6

Hi there,

I am not surprised to hear your story but you truly need to find a decent respiratory physician /specialist who can monitor you more closely & give you the treatment you deserve

You cannot rely on a general GP to understand or treat you well, they are not experienced

I have been seeing the same specialist for 19 years now and I am blessed, he knows me personally & can tell if I am well or getting sick. He also knows when my illness is serious & he knows my capabilities

I do not get treated by a GP or a Nurse. Only a GP for other illnesses not related bronchiectasis

Please find yourself someone valuable who you can see on a regular basis

As for family & friends. Well my opinion is quite judgemental so apologies in advance

I find that unless something is happening with someone themselves then they don't really care.  Find me one person you know who can sit down & tell you they understand bronchiectasis & what you are going through?

The general nature of the human race is a selfish one. Only YOU know what it is like and only YOU  can take control

Don't get too worked up over people who don't understand - if you don't expect too much from them then you won't be disappointed

However I am lucky - I have a partner who understands, I have a respiratory physician who is empathetic with a great bedside manner & I take control of my illness myself

I accept my family & friends will never understand & I accept those times when "it's all about them" because they have the flu or a skin irritation.

Also as hard as it can be, try to walk 30 minutes per day. I hgave been doing this since January 1st this year & it's made SUCH a difference in my life - I sleep better, myy cardio has improved, I breathe better & I feel more relaxed

It is not easy for me either, the damage to my lungs is at the top & they cannot be operated on &  my peak flow is arund 250 - but we all have our own cross to bear

Good luck with your treatment, please hunt around & find good specialist in  this area

7

Hi, I am sorry to hear of your bad experiences with GP's over the years.

Living with bronchiectasis and MS cannot be easy for you. I have bronchiectasis diagnosed 35 years ago, but really had a bad chest with repeated infections since I was 2 years old after getting bronch-pneumonia.  I am 70 years old this year, so have been through many stages over the years of living with this condition.

I am under the chest clinic care, and go as routine every 4- 6 months as routine, but if ever I am unwell I bring the appointment forward. Sometimes I take in a sample of sputum and then the hospital will inform me what I should do. I rarely see the GP, I rely on the clinic as they know me, I see the same 2 doctors and staff each time I go. I am in good hands and wish you could be too.

I accept the things in my life I cannot change and try to do the best I can in living with them. I often remind myself that there are people out there like me, and many worse off.

I am thankful for this website and the part it plays in helping me know, that others know what it is like to live with the condition. There is also a support group linked to the hospital that meets each month if ever I need a chat with people who understand.

I hope you can get some specialist care and that it will help you forget all that has happened in the past.

I wish you the best,

Stella