How do you deal with visitors that risk your health by visiting you when they aren't well themselves or have recently been ill - but only casually mention this after spending some time with you?
I'm sure there are plenty of reasons why this can happen; you look and sound OK, so you are no longer at risk of infection, people just don't think or they are ignorant that they are risking your health or even your life, there's a cultural expectation that they should visit, the visit is more about being seen to be doing the right thing and so on.
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AussieNeil
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I would love to know how to deal with this problem. I experienced it but the other way round.
We came home yesterday evening, after having been away for 2 nights, in 2 different places. The first place was a late Xmas celebration with my son in law's very extended family and a few of them told me they had just been ill. Then we travelled on and spent New Year's Eve with a coupe of dear old friends. One half of the couple didn't appear until the evening, in his PJ's, as when we arrived at lunchtime, he was in bed, feeling ill. He stayed up until about half an hour after we saw in the New Year. Yesterday we all felt ill but much of that was down to the bubbly and having had 2 late nights and very bad sleeps. We decided not to stay another night, as I was exhausted, with a badly aching back but also because the sick friend was no better. However, he did join us downstairs and then hugged me goodbye, despite me having just said "I won't hug you because of the germs". I turned my face away and didn't let my hands touch him. I despaired... they know about my CLL but obviously don't understand the fear of germs. I just wanted to escape the germ ridden house fast....it was a relief to get home again!!!
Prior to all of this, when we went away before Xmas, to have an early celebration with my son and daughter and their respective girlfriend and husband, I was greeted by my son in law telling me he was "full of cold"..... my heart sank.
It will be a miracle if I have managed to avoid so many germs.......
What can we say to them?????
sparkler x (not quite so sparkly today - more sparked out)
Over the years I have developed a 'bug' radar and prescreen visitors. Generally nobody under the age of 10 years gets through the door... and I ask people over the age of 50 about thier immediate health, prior to any visit... people love to tell you about the bout of bronchitis they had a few weeks ago...
NOBODY drops in for a visit...period...call first, make arrangements, it is up to us
to call the tune...we are the ones at risk ...
Cultural expectations perhaps...or is it more like looking at a car wreck? There but for the grace of God go I?
Who is really benefiting from the visit, germs or no germs...this has never been clear to me...
Chris - I absolutely agree with your sentiments about the practice of "dropping in" unannounced, whatever the health status of the visitor. To be honest - I never really welcomed "drive-by" visits even when I had a robust immune system - but nowadays, I find myself having to work hard to conceal my irritation when people turn up at the door without a quick phone-call first. It is especially annoying when people announce their recent cold/"flu"/bout of D & V/ their child's chicken pox (that one practically has me escorting them from the premises in dread of shingles).
I am also always amazed that so many people think that I will want to have a long discussion with them about what it feels like to be staring down the barrel of my own mortality whilst looking "so well". A recent (uninvited) visitor jauntily told me that she thought it was now "quite trendy to have cancer" whilst I dragged myself from the sofa after a hard day at work to provide refreshments for her and her kids!
The hardest thing for me though is that my job as a lecturer puts me in contact with large groups of students on a daily basis. I don't tell my students about my CLL, although my employers and colleagues do know. It is very difficult for me to tell students not to come in to my classes snivelling or sneezing without having to tell them why this is so important to me. If anyone is particularly infectious looking, I will avoid personal tutorials with them on the grounds of having a "dodgy immune system", but it is one of those problems that make you realize just how difficult it is to continue life as "normal" with CLL on board.
It is in part, I am sure, due to the invisible, insidious nature of the disease. People find it difficult to really accept that we are more vulnerable when we look as healthy (or healthier even) than we did prior to diagnosis.
CLL is a paradoxical disease in that sense, and culturally difficult for people to comprehend - but Chris is right - we are the ones at risk here. If appearing anti-social is the price we have to pay for staying well - so be it. It becomes more difficult though to negotiate that in our professional contexts - particularly if we are breadwinners, or significant contributors to our family incomes. I'm sure this is one of the major issues for those of us living with CLL.
Some interesting observations Jules, that I'm sure will have many of us nodding our heads in agreement.
Yes, how do you respond to the "You look so well" statement? Is that supposed to make you feel as well as you reportedly look? Is it a denial of your condition? I guess "Thanks" or "Good to hear that" is the appropriate response, but it is oh so tempting to say "If only I felt as good as I looked" or "Unfortunately looks aren't everything".
I get the impression that people really don't have a clue what it means to have a compromised immune system. Perhaps it's understandable. They can take it for granted that their healthy immune system will usually deal with whatever is thrown at it automatically and with little inconvenience. They simply have little comprehension of how a minor inconvenience to them can mean a lengthy debilitating illness for us.
Like Jules and Chris, I too, do not welcome spontaneous visitors. Quite apart from the CLL risks, I've always considered it to be slightly rude to just drop in unannounced - it kind of implies that I have nothing better to do than wait for visitors to turn up.
Hi after chemo I had little or no immune system but still looked and felt OK. Also I developed shingles a couple of months after chemo which was awful. Although I knew of the risks I felt shutting myself away from the world was not the right approach for me. I feel that I need social contact (although I am happy in my own company). This is where this on line contact comes in useful. I don't want solitary confinment nor do I want another bout of shingles. Also I play bridge where the cards are touched by all sorts of bugs, but I love bridge and it would mean giving up something that I enjoy. The balance is difficult for me. I know that I should be more conscience of my immune system. At heart I still want the life I had before CLL.
this is a problem , but we find that most TRUE friends will phone in advance to check it is ok to call , and also will not thrust themselves upon us if they are ill. Part of this is due to EDUCATING THEM ! . We have tried to explain everything as best we can , we have handwash gel in our porch for them to use and refuse to shake hands etc if there is any hint at all that they are not A1 , and say quite firmly before they approach --'' we wont kiss if you don't mind, just being cautious'' . Be firm , be kind , but above all protect yourself! Prevention is better than cure!
I don't know how to reconcile this with my decision not to disclose my CLL (a decision that is right for me).
I'm afraid I'll just have to develop a reputation for eccentricity and hygiene paranoia!
As a matter of interest, people have mentioned touching cards, money etc. Does anyone use thin plastic gloves at times of greatest risk i.e. public toilets?
Has anyone else managed to cope with this without having to disclose widely to family, friends and the general community?
I always carry hand gel with me, and wear gloves when I am out and about using public transport. Also I carry a mask with me which I wear when flying and going to the cinema etc. You get some funny looks, but who cares as long as I feel protected. I didn't tell my family for a long time either, but close friends and family know now and respect the fact that they cannot visit if unwell. Some people are incredibly ignorant about personal hygiene. I watched someone with a streaming cold and cough putting her used tissues down on the table we were all sharing and not covering her mouth when she coughed, during my patchwork class, I left early but caught her cold anyway and that was followed by bronchitis. So no more patchwork classes for me until the spring!
It isn't only the fear of germs: many of us experience varying levels of fatigue. Entertaining visitors can drain what little energy we have. Some visitors are worth this because they lift our spirits or help in some way, but sometimes I want to say no. I find other people's expectations of how I feel or am hard to deal with.
Florida for the winter!!! I feel fine when I leave home in Canada but after about 2 weeks I come down with pneumonia/bronchitis?? We live in a Senior's resort ...I am on first name basis with the medics at the local health care clinic....give me antibiotics, prednisone, inhaler and codeine cough mixture...same thing every year. I am just getting over my last bout which lasted 6 weeks...still coughing!!.
I now avoid all "group" activities in the recreational hall. Some folks think that I am just being anti-social......they do not understand
I don't want to give up Florida...I love the climate...love my retirement! I laugh and say "the old people down here are trying to kill me"
Hubby tells them I am really sick and they proceed to tell him "it is going around, everyone is sick"........very hard to explain to them that my immune system is "shot" caused by CLL and all the chemo/radiation I received for a prior colonrectal cancer.
I am like the little girl with the curl....when I am good I am really good (health wise) but when I am bad (health wise) I am REALLY BAD lol.
If telling others about your condition is an issue, and I know that it is for some people for a variety of reasons, put on the mask and gloves and tell them you are ill and don't want to share your germs with them - a stretch of the truth, as we are ill, and no one should share germs. People will back away, one hopes, to not catch anything from you.
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