Wednesday, 2 January 2013

Bad Language

Establishing a positive self-image and keeping a positive attitude is so important for people with Cystic Fibrosis. It would be hard enough to do this if the media was perfectly informed and sensitive; and everyone always spoke in enlightened and supportive terms. There is not much we can do about the media: they cannot handle complicated issues, they are not overly concerned with the truth, they can only deal in simple sound bites that get quick reactions and sell to the masses. However I think perhaps some of the images we project and the language we use in the CF community may create psychological challenges for people with CF and maybe we can do something about that.    

Of course we can and must engage the media and educate society in order to raise awareness of CF but it is a complex disease and it will take time. Here are some examples of some other things which are, to some extent, within our control:

Cystic Fibrosis

In some ways, “Cystic Fibrosis” is itself an unhelpful label.

Firstly, it is not very accurate. It was coined after the disease was first discovered based on observed effects on the pancreas. It sounds pretty horrible. I don’t like to think of myself as being full of cysts, especially fibrotic ones! The name describes the worst effects on the pancreas. Like 80% of people with CF, the disease mainly affects my respiratory system. The European name for CF is “mucoviscidosis” which means sticky mucus and I feel this a) sounds less scary and has a nice ring to it; and b) more accurately describes and represents the nature of the disease. I suspect it is not practical to change the name of CF now, although it has been done in other diseases. For example, “Restless Leg Syndrome” officially changed its name to Willis-Ekbom disease in July 2011.

Secondly, over 1,800 mutations of CF have been identified so far and, even if two people have the same mutation, they can be affected in very different ways. CF is a generic term that seeks to cover a broad spectrum of individual cases.

The challenge is to get people to ditch the labels and the attitudes behind them and get to know people as individuals. Similarly, people with CF must not be drawn into labelling themselves – they must discover and express their own individuality before they can expect others to treat them as individuals.

CF fundraising tactics, stereotypes and role models

Since there are so few people with CF, it does not get much funding from governments who tend to direct money at things which will win lots of votes. Fortunately the CF Trust, an army of volunteers, people with CF, families and ordinary people do an incredible job raising funds to make many things happen that would not otherwise happen.  Without that and the work of the CF Foundation in the US, life expectancy for people with CF would be much lower than it is today.   

While this is obviously a wonderful thing, my point here has to do with CF psychology. Fundraising campaigns invariably anchor themselves on very sickly children with CF. It is these cases that tug on the heartstrings, get people’s attention and find their way into the media. So what’s the problem?

When I was growing up I did not have much contact at all with other children with CF. There was no social media and we were not allowed to meet. I talked about CF with my parents and with my doctor. I was fairly healthy and did not spend much time in hospital. I was impressionable. Seeing stories in the media about CF always meant seeing very sickly children in stories that appealed to people’s sympathy. Despite the fact my parents tried to explain why I should take it with a pinch of salt, I always found the media images deeply depressing and no doubt they left a mark.  In those days I thought things on the TV or in the newspaper must be true. If only there had been some positive stories in the media as well to balance out the picture. I don’t think the absence of positive stories was because there weren’t any in the real world; more likely the media had no interest and there was no “positive” campaign to lobby them.  It was a shame and I think I would have been better able to cope with the challenges ahead if I had had some positive role models too.

Perhaps people feel that drawing attention to positive role models will somehow undermine fundraising efforts or the urgency to develop new treatments. I don’t think that needs to be the case.  We should promote some more positive role models. There are plenty. Here are some amazing examples:

Josh Llewellyn-Jones

Lisa Bentley

Kirstie Tancock

Rob Law, M.B.E.

Here is a list of some famous people diagnosed with Cystic Fibrosis:

There is some evidence to say that Chopin and Einstein had Cystic Fibrosis too but it has never been proven.

The “fight against” Cystic Fibrosis

Talking about the “fight against” CF does not make much sense to me. For me, it is as stupid as saying the “fight against blindness” or the “fight against death”. I think this kind of talk is quite unhealthy from a psychological perspective. CF is not a distinct thing that can be attacked. It is part of me and it always has been. It is not some external enemy like an army or a ‘flu virus. It is not a fight that can be won or lost. It is just something that happens and the only thing that matters is how we deal with it. I could not destroy it without destroying myself.

A “cure is just around the corner”

This kind of language also bothers me a lot. CF is certainly a horrible disease and we need to find better treatments. The cause of CF is well understood and because it is caused by a single gene defect it means it may be possible one day to cure it. However there is no certainty that a cure will be found. 

But what does “cure” actually mean? It means something which is a complete solution - a drug which causes a person to fully recover from an illness or disease. Drugs like Kalydeco and any gene therapy treatments that may work only have the capacity to “stop” CF doing any more damage but they will not reverse any damage that has already been done.  After several cycles of respiratory infection and inflammation in the airways, the tissue becomes scarred and less able to deal with future infections. It is this vicious cycle which claims the lives of 80% of people with CF. No treatment yet known will reverse this scarring. If a new born baby with CF and pristine lungs and other organs is treated straight away with such a drug then it may effectively be a “cure” since there will be no damage that needs to be reversed.

For most of us, it means it is vital to stick to the treatments and take good care of ourselves so that we stay healthy and are more likely to be around to benefit from new treatments and in as good a state as possible so the irreversible damage is minimised and we get the most value out of new treatments.

If you have CF, ask yourself this: “If I knew for a fact that I must continue for the rest of my life with existing treatment options only and that no new treatments will be developed, would I take my treatments today more or less seriously?”

This is complicated but for me the prospect of significant new treatments, which modify the disease rather than just treat the symptoms, is motivating because it gives me hope that if I stick to my treatments and behave sensibly, I am more likely to be around when these treatments come along to freeze my disease. So this factor motivates me to work harder to take good care of myself so that my disease might be frozen at the best possible level.

However, it is also important to me to live in the present and not feel like I am just biding my time until some miracle drug comes along and allows me to start living a "proper life" in the future. For me today is more important than tomorrow. I am alive today. I may not be alive tomorrow.    

I have always thought CF is probably harder for the parents to cope with than it is for those of us with CF. I was born with CF, it is part of who I am and I don’t know any different. Perhaps the fixation on a “cure” is something that mainly helps parents and families of children with CF more than people with CF themselves. I understand why people talk like this. It makes them feel better. It makes them feel like they are not just sitting back and letting CF “defeat” them, like they can do something significant, like they can win and, above all, that there is hope.

How would a blind person react if you asked them if there is any prospect of a cure and therefore any hope?  If they bothered to respond I think they might say something like “Well, it is very unlikely my blindness will ever be cured and I really don’t think about it in those terms. I have learnt to adapt and I like it when I find new ways to do things I want to do. I have plenty of hope about plenty of things.”  

I think the language of “fight” and “cure” might have a negative psychological effect on people with CF because it implies that until the “fight is won” or the “cure is found”, the situation is unacceptable and temporary. It seems to imply that right now things are “wrong” but one day they will be “right”.

Maybe the fixation on “cure” reinforces the notion that people with CF are somehow “defective” or “damaged goods” and that they need to be “fixed”.  Worse than that, maybe it makes people think that everything will be magically okay when the cure is found.  I think the danger with believing a cure is “just around the corner” is people might think what they do in the meantime in terms of treatments and lifestyle does not matter very much. It somehow takes responsibility away from the individual.

I think some of the language we use may contribute to depression and distract people from the real challenge. Or perhaps even supply an excuse not to face up to the real challenge. Depression is a common problem for people with CF and it is linked with non-adherence to treatment. I have certainly felt this way at certain times in my life and I don’t think it was good for me.

I think the real challenge is to understand how CF affects you as an individual, find your limitations and find out what tools are available to manage it. I don’t just mean do what your doctor tells you. I mean really take an interest in observing for yourself how medicines and other things feel, which things work and which do not. Then it is a case of using those tools and adapting daily activities to live life to the full.  We have to live now not wait for some magic version of the future.

For me, the point is to ignore generalisations. It calls for a willingness to be different, open-minded, unconventional and strong; to be true to yourself, experiment and find out what works for you. CF affects everybody differently and the way it affects each of us will change over time. People can advise and suggest things but you are the only one who can discover and know what works. Medicine is generic and based largely on averages, statistical data and evidence on how certain things have worked on other people in the past. I consider it my job to listen to the medical advice, refine it and make it work for me in the context of my own life. I have this power and it is important.   

It is not a fight as such. It can be a battle and it is a challenge to get to know your own CF, accept it, learn how to live with it and make the best of the hand you’ve been dealt. There are some things we cannot control and some things we can control. I’ve learnt there is no point worrying about things which are beyond my control but equally it is important actually to do things about the things I can control.

I am not saying I am perfect and I know that I am quite lucky with my CF. I have not always done the right things but I have learnt from mistakes and as long as I feel I am trying my best and not deluding myself, I feel pretty good about life. I am fortunate that I have always been able to do a lot of things and lead a full life in terms of relationships, social life, work and travel. 

I am well aware that CF affects everyone differently and I don't want to preach. Everyone has different talents and limitations and some can obviously do more than others. I don't like it when some people with CF who are able to do huge amounts imply that others who are particularly poorly are somehow being lazy. Everyone has to find what works for them. 

With CF, there seem to be the lucky ones who can do more or less what they want and the unlucky ones who are extremely poorly from a young age and severely affected. I am not saying that the right attitude is all you need but I do think it is absolutely necessary. You need a lot of luck, hard work, supportive people around you and good medical care to thrive with CF but you will not thrive without mental strength and a positive attitude to push yourself. 

I think the language we use affects our attitudes and those of the people around us whether we are conscious of it or not.

Finally I am not saying that we shouldn't do everything we can to find new disease-modifying treatments as soon as possible. We should and I happen to think there is a good chance we will succeed. However, I am saying we should not fixate on the idea of a cure as some sort of Holy Grail of new treatments and the only source of hope. 

We should be careful about the terminology we use and the images we circulate to make sure we don't distort people's attitudes and cause unintended harm. 


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