VOICE OF EXPERIENCE:Campaigning for better facilities to treat cystic fibrosis has its highs and lows. But the signing of a contract to build a dedicated unit at St Vincent’s is a ray of hope, writes ORLA TINSLEY

THE WORDS “advocate” and “campaigner” used to really annoy me. Not being a fan of labels anyway, I found this an irritating irrelevancy I couldn’t shake. Sometimes I’d feel the overwhelming urge to laugh when someone very important said one to me, or occasionally I’d give a cynical eye squint. As in, ohcomeonandstopcallinmethissilly name. I felt so strongly about my dislike for the labels that I began my speech with one at a recent Academy of Activism held by youth resource group SpunOut.ie.

“What is an activist anyway? It conjures up the idea of a dreadlock-wearing vegan chaining themselves to Leinster House or picketing to save the trees. I hadn’t gotten my head around the word yet, I don’t see myself as that.”

Everyone at the academy had at least two or three issues they were passionate about, some had up to seven.

They were part of this different wave of young people, one that did not want to leave the country, however disillusioned with the political and economic mess they were.

I was there to talk about how to “use the media” and what sort of strategy to have because of my five years campaigning for cystic fibrosis care. This was the funny part. In five years I never really had a strategy, just a goal, a clear message and the knowledge of what would happen if it wasn’t delivered.

When the contract was finally signed on October 14th to build the new cystic fibrosis unit at St Vincent’s University Hospital in Dublin, I was sitting alone in RTÉ between radio interviews. Someone asked me that evening if I had known it would take so long. I had no concept. I just assumed that, back in 2005 my article in this newspaper as a “voice of experience” along with medical evidence from Dr Ronnie Pollack who published his audit of CF services that same year, would be enough.

How could the truth not be enough?

Back in 2005, I had no real sense of the responsibility, positivity and negativity that came along with being “a voice”. Last week, I received an e-mail from a woman whose daughter has CF. She said when she saw me on the Late Late Show in 2009, I was the first person with CF she had ever seen. Her daughter had just been diagnosed. She was in tears watching me, and when she heard I had been to Italy and could travel it gave her hope. Her daughter is now four and, up until a year ago, she had never been outside her family home. She says as a mother of a young child with CF she is constantly afraid, but with the support of the parents network she is getting there.

IN THE PASTtwo weeks, I’ve watched CF appear across the media in well-researched pieces, in poorly researched pieces and in some spectacular pieces. The idea of protecting the message grated on me as I watched.

I wanted to kill the out-of-control monster that had started. In 2009, when my lung collapsed during campaigning, my friend said “the media is a machine, it will keep going”. The problem now was not that it kept going, but the nature of some of the things it was going with.

Inaccuracies popped up everywhere. One broadcaster began her piece by saying: “Liver cancer, a common complication of cystic fibrosis . . .” Liver cancer is not a common complication of cystic fibrosis. It simply is not true.

Another advocated that a patient died from cross-infection, and not rejection, after a massive operation; another began a conversation in which someone with CF responded saying that boys wouldn’t touch them when they found out they had the illness.

CF was spewing its guts everywhere and every single voice speaking was justified because it was their experience. The horror of the truth cannot be denied, but it can be overwhelming and it can be ill-informed.

Young teenagers began contacting me very afraid of their future. I had helped create this awareness, but the very real fear was exploding. The contract was set to be signed, we all knew that. But very few wanted to stop.

A deeply disturbed person who claimed they could cure cystic fibrosis started contacting young mothers and people with CF. It was shocking to see it was the same person who had looked for me in my home town some years earlier.

Now there is such great awareness, there is an even greater need for emotional savvy. CF is not the same for everyone, it is so very different. This is one of the biggest problems: even when we support one another over the internet or through the airways, our medical experience will be very different.

Researchers are still discovering elements of CF that appear as we get older. The only thing you can be certain of in CF is that single en-suite room treatment and dedicated staff will protect people and that a positive mental attitude goes a long way. This also means staying in hospital when you need to if you are unwell.

I have endured sleeping in a six-bed ward with earplugs, an eye mask and a mask to cover my mouth so I do not get cross-contaminated.

I’ve slept in a chair in the corridor or sat in the abandoned coffee shop at night.

It is irrefutably wrong that this has to happen, but if someone signs themselves out when they really need treatment the damage is irreversible. It is a stupid thing to do. The problem is not us, it is the system. By leaving it, we risk becoming another person lost in this mess.

On the air waves the week before last, an older man with CF used the word “malpractice”. He explained what happened to him in outpatients and said that facilities would not fix “malpractice”.

THIS WAS THEpoint where there was no turning back. There is a type of insanity that happens from spending large amounts of time in hospital. Exhaustion and stress from heavy drugs and the noises of human suffering are undignified and hurt the soul. They eat away at you, so sleeping in the corridor with a drip stand makes complete sense.

The facilities are diabolical, but the staff are not. If you are on a ward that specialises in a different illness because there is no space on a CF ward, it is insane and wrong. But it’s not the staff who work on that ward’s fault. If they make a real mistake, that’s their fault. But they can’t be expected to train up on every aspect of a multifaceted disease because of a system that lets both patient and medical worker down. The facilities are diabolical but the CF team are not.

One friend of mine got so angry, she sent an e-mail to Joe Duffy’s Liveline show. “I am 22- years-old and it is exactly 18 years since my diagnosis. I was nearly five and in junior infants. When I was five my mother was told to hurry up and have another child, as I was unlikely to see my teenage years. Rubbish. Here I am.” Her e-mail continues: “I am a vet nurse in final year, I work part-time. I have a long-term boyfriend, I live on my own. I drive, I have a dog and a cat. I’m completely normal apart from, oh yes! CF!”

She says her story can show people they can have a normal life.

“This disease can consume a person and their ability to see beyond their bubble. The world really is our oyster with very few limitations until we reach the end stage of CF. So why wait until we’re there?”

WHEN I STARTEDcampaigning in 2005, getting the truth out there was my aim. I was naively convinced that once people in charge knew what was happening things would change. When they didn’t, my own nana offered to pay for anything that might keep me in better facilities, the HSE did not.

I have been in the position before where I would put off going into hospital because of the psychological trauma of hanging out in a room with unknown infection, screaming women and sleepless nights. I have felt deeply disgruntled at staff for their inability to give me the proper drug, tablet or nebuliser on wards that do not specialise in CF.

When I wrote my first article, the now retired sister of the CF ward told the Cystic Fibrosis Association of Ireland that she was waiting for an apology from me. Several people said few words to me, many others congratulated me. Others had seen it before, because people with CF were speaking out long before I was.

It took a few years before many people really understood that I had one goal and one goal only. As the years went by, so many others became evident.

Most specifically, there is a lack of support in the education system for people with CF. It was a lesson learned from my own Leaving Cert experience and how difficult it is to keep up and convince people you’re not a complete messer when you are acting like you are stoned out of your head with erratic behaviour and diabetes that had yet to be diagnosed. Not to mention the difficulties concentrating in class because you’ve been up since six taking intravenous antibiotics or running to the toilet six times in maths because the windows don’t open and the dust level is irritating your lungs. And then there’s that sense there’s something bigger because you’ve seen so much and you know that school is not the be all and end all of life.

A girl with CF from Cork e-mailed me to say that her family and team were “fed up listening to us moan about those patients who have no control over the system either”. She said it was the “wrong angle”.

I told her I didn’t have any control over it. The truth is that while CF has grown so immensely as an issue in Ireland over the past five years, there is still a ying and yang within the community. Many people are happy that I speak out, others remind me at every opportunity that I am just one person and that there are far better people than me who never “looked for recognition”.

No one democratically elected me, it just happened the way it did. People can now speak up but it is a double-edged sword. None of this matters as long as the unit happens and as long as you stick to the message. Except last week the message veered so far off-track I worried about the lasting damage it might have. The picture of a man with CF 48 hours before he died smeared on the front page of two tabloids was difficult to stomach.

Was it necessary? There are no rules in campaigning really except clarity, consistency and truth. The problem was that so many false promises created a false economy of trust and truth.

Last week was an historic one for people with CF, their families, friends and caregivers in Ireland. My truth is a positive one. Get treatment, please God everything will go smoothly and we will all live as long as possible.