Know me by My Name, not the Disease

I recently had a long conversation with another friend with CF on the ignorance of the general public when it comes to coughing outside of the confines of your home environment. The chat went on for a considerable length of time, and at the end he suggested I write an article about it. So here I am, but now I am here, where do I start?

I cannot remember a time when I had no cough, yet can only remember being conscious of it and its effect on others and the attention it draws to myself more recently, i.e. since I reached adulthood and could no longer be protected by the shadow of my protective mother.

It wasn't until about 6 years ago that I got 'round to asking my Mum if she had noticed the way in which people would look in concern at me when I spluttered loudly in public, and in particular tried to inconspicuously move further away from their vicinity, when in a confined space.

(Quick tip: If you hate sitting in a crowded train carriage, within a few minutes of a chesty wheeze you can often find a convenient spare seat beside you for your accompanying bag.)

Anyhow, my Mum replied to me that yes, this was something that she had noted over the years, and although hurt by it, had learned to ignore it, putting it down to human nature.

"...I was not the invincible person with Cystic Fibrosis..."

I guess it was bad timing that when I started to notice this unwelcome attention I was also becoming more aware of my own deteriorating health, and that I was not the invincible person with Cystic Fibrosis that I had always led myself to believe I was, as a formidable, defiant teenager.

To take a step back a bit, during my teenage years I had never kept my CF a secret, per se say, but was fortunate that due to my fairly good health I was able to decide who knew what and when, within my social circle. I belonged to a small, teenage community who hung around together, who usually only saw reference to my CF when I was using it as a prop for my renowned, crude sense of humour.

Amidst the daily dirty jokes, a day wouldn't pass without me having broken wind on several occasions, and when we were under the influence of alcohol I often circulated 'my friend, the phlob pot' for contributions!! As you've probably gathered, I was not what would be classed as a 'young lady'. However, I was popular with the boys, I think due to the combination of my down to earth personality, feminine good looks, and (if you were my boyfriend of the moment) intimate exclusivity.

If you are a parent reading this (not to mention my mother!) no doubt you will be cringing at the aforementioned description of my teenage lifestyle. When it came to how I was viewed by the community I grew up in, it was a different story. My family's home was in a small village where I was known as a sort of 'poor little sick girl', despite the fact that I was not that 'sick', and no longer very 'little'. It's now true that I am no longer little, but I am also no longer that 'rock 'til you drop', head-banging extrovert my friends of that era remember (some of whom are still rocking and dropping!)

"Denial was never an issue for me...until now."

I am now in my late 20's, and my lifestyle is far more sedate, fortunately by choice as well as by lack of it. I thoroughly enjoyed my wild-child years but it's not what I want out of life now. I'm just as content to sit in front of the fire with my dog, and watch TV of a night-time, as sit over a pint of cider in my regular hang-out until I fall off my bar-stool of choice, in an intoxicated fit of laughter.

I may have lived my youth to its fullest and abused my body in smoky pubs with excessive alcohol binges, but I still took my medicine and did my physio religiously, however reluctantly. (Thank you very much.) Denial was never an issue for me...until now.

"Laughter is suppressed now…"

Denial and suppression go hand in hand as outside my home I spend my time trying to salvage what I have left of my right to choose who knows what about my life with Cystic Fibrosis. Laughter is suppressed now as it leads to breathless gasps of coughing, and I try not to cough at all, wherever I am.

At times I find myself very resentful of my rural community upbringing as everyone wants to know my business and I feel that this can be quite patronising. An innocent 'How are you?' can be misinterpreted as 'How are you coping?' (although much of the time this is a correct interpretation.)

I took advice from a friend who told me that when I get asked the inevitable question, 'How are you?' just reply 'I'm fine, how are you?' throwing the question right back to take the attention away from yourself. You soon find out:
a) Their original intention, i.e. they'll accept your answer and move onto other lines of enquiry, OR insist on probing you further when they are in fact wanting you to divulge details beyond the information you feel comfortable to reveal,
b) That you wish you'd avoided them entirely as they respond to your question by providing you with a list of their own current health and personal problems.

"…distraction is what I need, not confirmation."

Alongside being less able to ignore my decreasing physical capabilities, I have felt the need to escape from these probing questions, however sincere they may be. They only end up drawing more attention to the changes I have had to make to my life to accommodate them, and a distraction is what I need, not confirmation.

I feel that yes, I am most definitely a different person than I was 10 years ago, but who isn't? However it's due to my own insecurities and need for freedom of choice that this can be blown out of proportion, sometimes to the point of paranoia.

For me, confidence accompanies days when I'm feeling fairly well. On bad parts of the day, when I am unable to hide my state of breathlessness, I try not to leave the house. The grocery store is a nightmare for me on such occasions, checking each aisle for familiar faces before I enter them for fear of being questioned. If someone had told me 10 years ago that I'd be the kind of person who'd spot someone I knew and take an automatic detour, or walk past them pretending not to see them, I wouldn't have believed them. But, it happens…

"Better keep a safe distance in case it's contagious."

I feel very conscious of people looking as I cough or struggle for breath. I can see it running through their head, 'What's she got wrong with her? Better keep a safe distance in case it's contagious'. (Look for the fear in their eyes when they're trapped in a lift with you!) Comments such as "You should give up those cigarettes" or "Cough it up it could be a gold watch" are firm favourites to us all I'm sure.

I realise that at times I'm my own worst enemy. I'll suddenly realise that I'm being watched or approached, or am about to have a coughing fit, or encounter an acquaintance, and suddenly go into a panic attack as a result. This then ultimately leads to complete lack of oxygen and/or a bout of coughing or in the worst scenario, haemoptysis (coughing up blood), drawing even more attention to myself.

"…lack of comfort zones…"

So - where is this leading to, you may ask? I realise now that this has just led to a depressing description of my own lack of comfort zones, of which there are not many outside my home.

I suppose I could be accused of using this opportunity to share with others (who might empathise and also realise they're not alone) to vent my troubled soul. But maybe I'm also hoping that this may be read by those who come under the category of people who come into contact with people with CF and ask 'How are you?'

I do realise that it's an acceptable question asked by and to everyone, but it holds so many other connotations. Both the enquirer and responder should consider a need for tolerance on both sides. I'm pretty sure that the intentions by both are equally good (most of the time!)

By the way…how are YOU?!'

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