Wednesday, 2 January 2013

Invisible Disabilities

When it comes to disability you cannot judge a book by its cover. People with Cystic Fibrosis can be disabled. They may or may not need a wheelchair. CF is a complicated disease and many of the symptoms can be invisible. This does not make them any less real but it can create some challenges in a society which thinks disabled = wheelchair. The word “disabled” is out of date. CF affects people in very different ways and perhaps it is itself an unhelpful label. People with CF can do many things but they will probably find there are certain things they cannot do and that they sometimes need help. Inspired by the 2012 Paralympics, this article is about the dangers of using labels and the need to treat people as individuals. 

This is a controversial subject. I hope it makes people think without causing offence. These are just my personal views and, as ever, I am interested to find out what other people think about this.

The 2012 Paralympics made me think. When I was watching the Channel 4 coverage I realised I was doing something of which I am not very proud. Some people may think I am awful but I am, at least, being honest. When a new competitor came on the screen, I’m slightly ashamed to say I would basically give them the once over, see if they were in a wheelchair and whether they had all their limbs and/or any visible signs of disability. If they were not in a wheelchair and they had all their limbs, I would think to myself, “They look alright.” I thought this was a fairly primitive reaction but I know I was not alone and I believe this is basically how people think about disability. I was actually interested to know exactly what was wrong with the people because I wanted to know what kind of challenges they were dealing with from a human interest perspective. I actually would have liked to see the TV coverage include a very brief statement of the nature of their disability in the introductions. Maybe the athletes want people to think only about their performance. I can understand that. Nonetheless, it made me think about the nature of disability and the way we perceive it. 

The Paralympics were extraordinary. For me, they really epitomised the best of what us humans can achieve.  I found the performances and the opening and closing ceremonies extremely inspiring. This sounds ridiculous but it made me feel proud to be human. The way that some of the competitors had accepted and embraced their situation and focused on pure performance was exciting and energizing. They were not just doing the regular Olympic events to a lower standard than the regular athletes, they were actually doing their own events and some of these were more dynamic and exciting than the Olympic events. I felt empowered and humbled at the same time.

I actually wondered whether anyone with CF had ever competed in the Paralympics. I still don’t know the answer. If not, why not? Would one be allowed to use ambulatory oxygen? (I do know that several people with CF have competed and won medals in the World Transplant Games following a transplant which is fantastic but somehow different.) 

Cystic Fibrosis is a bit like autism in the sense that there is a spectrum – symptoms vary and range in severity. Some of these symptoms are visible, others are not. The fact you can’t see something doesn’t make it any less real.

CF affects different people in very different ways and the way it affects any given individual can change dramatically over time. Some people with CF can appear to be very healthy. Others can appear to be very sickly. Some may need very little support while others may, for example, need to use a wheelchair and portable oxygen or be unable to leave hospital. CF affects multiple organs in complicated ways. The way people look is not a reliable indicator of their health or their abilities (or much else for that matter). Yet society thinks disabled = wheelchair. The official symbol for disability reinforces this notion.

CF can be a real disability. My observation is that, if you are not in a wheelchair, people don’t always believe you are disabled and they may be suspicious of your motives. If you have a disease like CF which impairs your ability to do certain things at certain times but no visible signs of disability you are likely to get some insensitive or upsetting remarks as people may not believe you need special accommodation or they may even think you are faking or exaggerating your condition. I myself have experienced this in school, at university and at work. As I have got older and more self-assured I have learnt to deal with this by stating, calmly but firmly, exactly what it is that I need and why I need it.

On the one hand, we don’t want people to assume that just because we “look fine” it means we don’t need any help or accommodation. On the other hand, we don’t want people to assume we can’t do things just because we have CF.

Perhaps this is an impossible balance to strike and people can’t win!

On the one hand, we want to have as positive a self-image as possible, avoid sticking labels on ourselves and focus on the things we can do. On the other hand, there are likely to be certain things we cannot do, some adaptations we require and times when we need help.

Sadly, from time to time one has to demonstrate how one fits the criteria for certain of society’s labels in order to get what one needs. However, if you allow your thoughts to be polluted by concern for other people’s opinions and society’s unhelpful expectations, you will drive yourself mad trying to reconcile these conflicting feelings to no useful purpose. Don’t bother - life is too short.

Like the symbol above, the word “disabled” seems a bit out of date. It stems from soldiers coming back from war with limbs missing. It describes people who were once fully “able” and then had their range of ability limited somehow. It was not intended to describe people who were born with a disease which significantly impairs their ability to work and do other ordinary daily activities.  

People say some crazy things about this and even start inventing absurd new words which succeed in not offending anybody but completely fail to carry any useful meaning.  For me, the point is that some people have conditions that impair their ability to do daily activities to the point where they cannot do certain things or they need adaptations or allowances to be made. I think you have to say how things really are and not how you would like them to be. I think about myself as being handicapped by CF in the sense it is a burden which makes my life harder than it would be without it. I am not going to get tied up in choosing the right word to label myself. My condition and the limitations it places on me today are simple facts and I don’t mind asking for help when I need it.

Society says you should have a career, a house, children and certain other things. Society says these are what it means to have a life and if you don’t have them you are somehow not a proper person. This is complete rubbish. To be honest, a lot of “normals” I know end up mindlessly being drawn into an existence that includes all the ingredients society deems necessary yet they are bored, unfulfilled and, arguably, not living at all. To a certain extent, CF allows you to tear all this up and decide for yourself what is important.

I try to forget about society’s expectations and any ideas about what is “normal”. Normal does not really exist – I believe it is a misconception perpetuated by people who are insecure and seeking safety in numbers. These things are a kind of mental pollution. I try to think about my own particular nature. When I have figured out what I really need to survive and thrive, I just try to go for it and make whatever changes I can. I feel as though I have re-invented myself three or four times in this way as I have got older and my health and other things have changed over time. It can be difficult and emotional; and it involves sacrifice but it is about self-preservation and you can’t make an omelette without breaking a few eggs!

I have learnt to speak up more in general and realised that in many situations “the squeaky wheel gets the oil” i.e. you cannot rely on people to give you the things you need and are entitled to, you have to find out who can give it to you, demand it and get in their face until you get what you need. You need to be able to put yourself in other people’s shoes, understand their motivation and hussle. It can be tiring especially when you are feeling ill and your need is greatest but it is a matter of self-preservation and being true to yourself.    

I think it is vital to ignore media stereotypes and any labels, expectations and constraints that society tries to impose on you. Just ask yourself:

  • What can I do? What do I enjoy? What am I good at?
  • What do I want to do? Who or what exactly is stopping me?
  • Are there things I want to do but cannot? What things? Could I do them a different way with some adaptation or with some help? What adaptation? What help?

The Internet, social media and flexible working options are opening up all sorts of opportunities. There are many different ways to skin a cat. 

So forget about society and its labels – just keep your eyes on the prize and go make it happen!

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. 


In ancient China, doctors were paid to keep people healthy. They were not paid if the patient became sick. That truly is preventative medicine. There is a fundamental difference between the Western approach to life and the Eastern approach. People like me with complex chronic illnesses can learn a lot.

I have a Chinese girlfriend who has taught me a huge amount about life and different ways to think about and deal with problems. She is extremely pragmatic and if there is a problem she always wants to know exactly what is causing it. She is incredibly observant. For her, “good” and “bad” are unhelpful labels. Just like Ying and Yang, things are never 100% good or 100% bad. Things which seem good in one context may be bad in another and vice versa.   

What matters is whether something is real or unreal, true or false and how you deal with it. She is fiercely realistic. She is also fiercely positive because she is very resourceful, adaptable and creative that she always believes she can figure out how to find a different way to achieve things.

In fact she completely changed my attitude to physio. Before I met her I was very self-conscious about it and basically tried to hide it. She had done a lot of research about CF herself when she first met me and she knew what I should be doing! She eventually persuaded me to show her what I did and share it with her. She watched me doing physio (in those days, postural drainage and active cycle of breathing) and she thought it was brilliant and even quite cool. She thought the whole thing was a bit like yoga. She thought it would be a good thing for everyone to do not just people with CF and she sometimes even does some of the techniques herself when she feels the need.

Her attitude and support helps me enormously; she has helped me to let go of vanity, forget about how things look and focus on the results. She has been great for my health and my sense of self.

In addition to all this confidence-boosting and pragmatism, she has also taught me a lot about Chinese medicine and philosophy. I have been to China several times, I have done business in China, I speak a little bit of Chinese and I have got to know lots of Chinese people.

Of course I am making some major generalisations here but I believe they are valid. In the West, people tend to think they can do whatever they want and when things go wrong they can just take a magic pill and everything will be okay again. We love the idea of quick fixes and avoiding responsibility for our actions.  The media and companies trying to sell us things (temptation followed neatly by redeeming cure) encourage this way of thinking because it suits their commercial interests.

We don’t like to think too much about the underlying causes of problems. We like to compartmentalise things; thinking about specific problems in isolation rather than as part of a whole. We are always fire-fighting rather than acting to prevent things happening in future. I believe this is how we think and, frankly, how the NHS and politicians operate too.    

The Chinese approach is different. They think about the body mechanically and as an integrated system. Much like a machine, the body is dependent on what you put into it. We wouldn’t put the wrong fuel in our cars so why are we so much less respectful of our own bodies.  For us, medicine is a sort of self-contained subject separate from everyday life - something doctors talk about and which happens in clinics and hospitals.

For Chinese, everything is medicine and everyone has a responsibility to know about how to be healthy and avoid illness. Things like exercise, massage, sleep, hydration, food and drink are all “medical” things in the sense they all have an important effect on health.  It is amazing how much Chinese people think about what is in their food, how different ingredients are digested and the “function” of the food on the body. This is a much more integrated way of thinking and it seems more grown up.

Food therapy is key aspect of Chinese medicine and the lungs are considered to be the primary driver of overall health. I tend to get a very dry, tickly cough and I have a fast cough reflex. Chinese believe this is caused by an excess of heat (Yang) in the respiratory system. They call this “lungfire” and one treatment is to eat certain Ying (cooling) foods to restore the balance.

Good Ying foods to nourish the lungs are: pears, apricot, black grape, grapefruit, orange peel, tangerine, water chestnut, radish, ginger, onion, yam, carrot, peppermint, chrysanthemum flower (in tea), honey, duck and pork.  

Garlic is generally recommended for its ability to kill bacteria, detoxify and promote digestion.

Drinking water which is around body temperature is believed to be better for you than drinking cold water. It is supposed to be much easier for your system to process. I find drinking warm water more soothing and it helps me, more than cold water, in getting coughing fits under control.

I would be very careful about taking Chinese herbal medicine as such and I would not do anything that might conflict with my normal regime of treatment. I would definitely talk to my doctor before doing anything with a “medical” aspect in the Western sense.

I am not saying the Chinese approach is perfect - far from it - but some aspects of it do seem more sensible than the Western approach. After all, they have been around for about 4,000 years, there are 1.4 billion of them and some of them live into their 120’s. I would love to see a new kind of medicine evolve combining the best of both worlds.