Health is everything

Good health is everything. So some people believe.

 

As humans  we structure our needs in that well-known colloquialism of ‘[insert life changing challenge e.g. having no job or experiencing a divorce] …but hey at least I have my health’.

 

I would argue that having no job or experiencing the break up of a lifelong relationship are often far more significant events than experiencing poor health, but as a society good health is so fundamentally cherished and important that the loss of it trumps most other misfortunes.

 

My issue with that idea is not just because it is totally subjective (someone’s poor health could be frequent headaches vs another’s experience of a life-threatening disease). But I also believe that some degree of poor health can be an enormously influential motivation to improve health. A motivation, that many people without an illness and those who take their good health for granted, do not have.

 

So I do believe that health is everything, but perhaps not in the same way that traditional phrase can imply, and I certainly don’t believe the opposite logic that poor health is worse than everything else life throws at you.

 

I’m aware that some aspects of this belief are controversial. Especially when poor health in its various forms kills people. It will probably kill me one day. But as a person with a chronic illness, I passionately believe I have gained things through having CF that I would unlikely have otherwise had.

 

Hopes, dreams, and a perspective that I fear would have passed me by if CF didn’t force me to slow down at times. A wish to be more grateful for the good happenings in life and a slow-burning determination to achieve what I care about, that personally, I think my CF is partially responsible for.

 

Some of the most inspiring, compassionate and intelligent people I have ever met live with poor health. I do not believe it is a coincidence.

 

Health is not a dichotomy.  Not everything that results from poor health is bad, and not all that comes from good health is instantly positive.

No matter how difficult or uncertain life can sometimes be with a lifelong illness, had I lived a life with perfect health I would simply not be me.

“Professional discrimination with cystic fibrosis. Part I: on TEFL and South Korea.”

This is a topic I really want to talk about and if I could give any advice to young adults with health conditions it would be this. I suppose it’s about more than work discrimination, it’s about being comfortable with who you are and having the confidence to believe in your abilities,  which is definitely something relevant to everyone; not just those with health conditions.

As far as I know,  I’ve not been subject to any significant discrimination in the UK workplace due to my CF, but it has affected me elsewhere.  I travelled widely in my gap year as I was well enough to do so and had no reason to expect that would change. I studied Spanish in Cuba, worked in an orphanage in South India and travelled around Bosnia and Croatia. Living in other countries is something I enjoy immensely and I hope to do it for much longer in the future.

When I graduated in 2010 I also applied to teach English in South Korea for a year.  I was interested in Korean culture, wanted to study the language,  had a good degree and was in many ways, just the kind of candidate the Korean government was looking for.

So I applied for the EPIK programme, run by the government to place native English teachers in schools around Korea. I’d heard they were getting tougher with their selection process that year, on account of the global recession taking a big bite out of Western economies and sending many fresh grads further afield.

I worked really hard on my application and was short-listed for a Skype interview. My interview passed without incident and me mentioning that I had ‘a lung condition that did not prevent me from working full-time in the UK and generally good health’. The interviewer told me this shouldn’t be a problem and I should just provide a doctor’s note with my documents.

An hour after the interview I got an email informing me that EPIK was delighted to welcome me onto this year’s programme.  I had been accepted! I was seriously chuffed,  but also a tiny bit scared when I thought about that doctor’s note, as I knew that cystic fibrosis was poorly understood in Korea and might be considered a much more serious condition than it was for me.

CF varies massively in terms of severity as a condition and naturally the more serious cases are the ones more frequently heard about. When my doctor put the letter together for me I was even less happy and felt really vulnerable about having to expose details which I did not think were relevant to my ability to teach in Korea.

Doctor’s are (quite rightly) very thorough sorts and this was no exception. My full medical history,  which looks much worse on paper than in reality, was divulged. Including: secondary diagnosis of cystic fibrosis-related diabetes (a sub-type, neither I nor II), chronic sinusitis, a lengthy medication list and lots of medical jargon. Thanks doc.

Of course, they were doing the right thing,  and they also explained that my lung function was within the average range and that I worked full-time in the UK and was in good health etc, but really the damage was done. I sent the letter off to EPIK with a heavy heart and then heard…nothing for over 2 weeks. Finally, a formal email came through informing me that “unfortunately they couldn’t proceed further with my application on this occasion.” Even though I’d already been accepted. I was devastated.

Don’t get me wrong, from an impersonal and purely economic point of view I got it; there were hundreds of other eager grads to pick from and I was just a bigger risk than some others. I understood that,  but from a personal perspective,  it still fucking hurt. It was a massive knock to my confidence and made me start to worry that, off the record, all potential employers would see me as the bigger risk compared to candidate b and pass me over, legal or not. I had not had any significant problems with my CF until a couple of years before then anyway as I’d had such a healthy childhood. I started to be scared that my career ambitions would end up being too big for me.

Fortunately, I stuck two fingers up to EPIK and went to Korea anyway. More on that in Part II.

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“Do anything nice on your day off then?”

…Why yes actually, I spent a very engaging 6 hours in hospital taking part in a first-of-its-kind phase III clinical gene therapy trial.

Could have done with an actual day off though, come to think of it.

So I’m currently taking part in the UK’s only ongoing major gene therapy trial for cystic fibrosis patients. To be considered you have to be well enough to be living a fairly ‘normal’ life with a lung function that is mild to moderately affected, but ill enough for them to clearly observe any potential improvements as a result of the trial. I am one of those lucky people.

As far as I’m concerned, it’s my first real attempt to ‘give something back’ to the CF community. I have fund-raised before, but never to a significant level. I’ve filled out a few surveys in hospital and taken part in some very brief product trials but nothing more. I thought it was an appropriate time to do more and of course, with a potential benefit to myself.

Here’s the catch though. Like any major medical trial these days, there has to be a placebo involved in order to verify results for the wider world. This means, every 2nd person on the trial, will be taking a placebo treatment for the entire duration, (obviously) without their knowledge.

The trial is a year long, with monthly appointments that take a minimum of 4 hours and a maximum of 8. That is at least 72 extra hours I will spend at hospital this year, in addition to other routine appointments I must attend every other month. Not to mention any unscheduled time for treatment due to illness.

I must do this around a full-time job with hours that often extend over 9-6. I also have several side projects on the go, not to mention my career ambitions, regular exercise (an essential part of staying well) friends and family to see, a life to live and a decent amount of shopping to fit in too.

I could spend all that extra hospital time receiving nothing more than a simple saline solution with no medical benefit to my lungs. Which is why, I think, it’s very important to take part in things like this for reasons other than my own health. By participating, I’m helping scientists and doctors help the next generation of CF sufferers live healthier, longer lives, and perhaps even bring that all-elusive cure a step closer for us all.

That, I think, is a venture worth taking part in.

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One of the more successful recent shopping sojourns. Cheers Zara!