The Invisible Illness

May is Cystic Fibrosis (CF) awareness month and it also happens to be share a story month. Seeing as I have some experience with the former, I thought I would combine the two.

Those of you who know me, will be aware that my husband, Tom, has Cystic Fibrosis. Or then again, maybe you won’t. He is more open about it now than he was when he was younger, but it isn’t something we really share with people. Luckily, for the most part, Tom has been well enough over the years to be in a position where he had the choice. To the outside world Tom looks fit and healthy, he seems fine. To the casual observer he has a cough and takes pills when he eats, that’s it. But the truth is he is fighting an uphill struggle every day, taking up to 20 medications, five daily nebulizers and countless different pills.

Tom and I have been together since we were teenagers. When we first got together I had heard a rumour from a friend that he had CF. I’d never heard of it before and it was the nineties, so it wasn’t like I could go off and google it! What little I did find out didn’t correlate with the fun boy I knew, full of energy and life. When things grew more serious between us and he did finally tell me, I followed his lead on how to deal with it. For someone with a chronic illness, telling a potential girlfriend or boyfriend must be difficult, I’d imagine. When is the best time to do it? What does the other person really think? Do they want to leave?

Not being treated differently was a big thing for Tom. He wanted to be the same as any other teenager. Fortunately, apart from hospital appointments and the odd admission Tom was relatively well. This made it easy to carry on as normal–so that’s what we did.

Then, ten years ago, while we were planning an around the world trip Tom’s lung collapsed. It was the first time anything really serious had happened and I still remember how scared I was when I found out. As far as I knew, if your lung collapsed you were dead. But his lung was drained, and he had an operation to stick it back to the wall of his chest to reduce the chance of it happening again. We went on our trip and had an amazing time, exploring volcanos in Hawaii, glow-worm caves in New Zealand and beaches in Fiji. Living in the moment seemed more important than ever.

We returned home, and time moved on. We got married and bought a house, ignoring frustrations, like not being eligible for life insurance, because it was time for the next challenge.

Only 5% of males with CF are able to conceive naturally, so I was aware we would need to go down the IVF route well before we were in a position to want children. Looking back, I feel our long-term relationship meant we were strong enough to take on IVF, but it wasn’t easy. The tests, the hormones, the injections. It upset me to know Tom felt guilty that we had to go through that process, but I expect those feelings are an issue for most couples undertaking the IVF process. At least we knew what the problem was right from the beginning so could bypass the difficult investigation stage.

We were lucky and were successful on our first cycle. My heart goes out to those who aren’t so fortunate, whatever the reason.

2013 was both the best and worst year of my life. Against all odds, our beautiful son was born.

A couple of years previously I’d had the test to see if I was a carrier of the CF gene. Thankfully, I am not, which meant that we could rule out any chance of our baby having CF. Although this does mean he is a carrier, so it could be an issue if/when he wants to have a child.

New parents will know, a baby is a shock to the system to say the least. But then out of the blue, everything changed. When Harry was 3 months old Tom was taken ill. He had contracted NTM, an extremely nasty CF bug which infects the lungs. He was in and out of hospital for months, his longest stint being six weeks. He was so ill. I had never seen him so bad. He grew weaker, lost weight, his energy drained away. I did my best to hold it together, for Tom–and for Harry–but it was hard. One time someone at work asking me how I was, and I just began to cry, unable to keep my emotions and fear under control any longer, it came pouring out as much as I tried not to.

I had always thought of his illness as something that we would have to deal with in the future and watching this unfold while we should be enjoying time with our baby in this new chapter of our lives, I was so afraid that the time had finally come.

I remember vividly being in his hospital room when the doctor told us NTM hadn’t shown up in his sputum sample. It would take a further year of clear samples before he was out of the woods but there was light at the end of the tunnel. The sense of joy, the relief, that he might actually get better, floored me.

The treatment Tom has received over the years from the Royal Brompton is the reason I am such a huge champion of the NHS. I work for the NHS (in HR) so I have seen both sides. Yes, it can be frustrating, badly managed, gets misused and is taken for granted, but without the NHS I sincerely doubt Tom wouldn’t have the quality of life he has. Not only due to the treatment but the added stress of dealing with medical debt and insurance cover. It is difficult to watch the NHS being constantly criticised, when the people on the ground are some of the most caring people I have encountered. Doing their best and often going above and beyond in the most difficult circumstances, faced with continuous cutbacks, pressures to deliver in impossible circumstances often with little thanks.

Gradually, Tom began to get better and while it took a long time, he managed to build his strength back up.

On a daily basis Tom’s health fluctuates. Since he had NTM, my worry escalates much faster than it used to. While I am happy to say he is relatively well right now, Tom’s lung function is extremely low. It has seen very little increase since 2014 and it looks like the damage NTM did to his lungs was permanent. This means that any future problems which occur could leave him in a critical situation as he has very little to give. He has been assessed for a lung transplant, but this has been deferred for the moment. We have to be extra careful now Harry has started school so there are more colds and coughs in the house than before and even something as minor as this can see him back in hospital.

Our son is too young to understand much more than ‘Daddy has to stay in hospital sometimes when he feels poorly’ but the day will come when we need to try and explain and unlike me, Harry can Google.

In recent years Tom speaks to a lot of other people with CF online and it has become very clear that in the grand scheme of things he is one of the lucky ones. Some of the people are so ill, struggling to maintain a normal life and all too often he receives the sad news that his friends have died.

For me I find it hard to balance dealing with the reality of CF, with not letting it take over. Sometimes I feel like I am burying my head in the sand but then other times I feel like I am dwelling on it. I cannot allow myself to think about his life expectancy, no matter how strong I try to be, I find it too upsetting.

High volumes of different medication and all the various side effects, as well as the symptoms of the illness itself, mean that coughing through the night, vomiting, lung bleeds, breathlessness and continuous, exhausting physio are all regular occurrences Tom has to contend with. Watching the ones, you love in any sort of pain is always difficult. When faced with any kind of problem I immediately to try and fix it and when something is so out of your control the feeling of helplessness can be unbearable.

Being well with such a low lung function is unusual and meant that Tom was eligible for a program which supplied Orkambi, a new medication which has seen incredible results for some CF patients but is not currently available on the NHS. It is still early days, and the jury is out on how it is affecting him. It may not be the miracle cure that we hoped but it is supposed to stop progression and we are grateful that he has had the chance to take it, unlike many others.

Tom works hard on a daily basis to keep on top of things and look after himself, doing everything he can to stay well and I am so proud of him. I know the guilt over not being able to do things with Harry, like have a kick about at the park, gets to Tom, but he is a wonderful role model of strength and courage for our son. He rarely complains (although is still susceptible to a dose of man flu from time to time!) but this can add to people not realising there is anything wrong. I suppose that is one of the reasons I wanted to write this. To explain that just because you can’t see something, it doesn’t mean he is not having to deal with it and the effects every single day. It is not who he is, but it is impossible to pretend that CF doesn’t impact so many elements of his life.

We don’t know what the future holds but hopefully, as treatments continue to advance, there is a real chance a huge breakthrough is in sight. Let’s hope that one day they find a cure for this invisible illness. I feel like they are close.

Please take a moment today, to go outside and breathe in a huge lung full of air, and really appreciate it–just breathing is something we all take for granted.

Visit the CF Trust or the CF Foundation to find out more about cystic fibrosis or to make a donation to the research program.