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Work and cystic fibrosis - your stories

In the April issue of CF Life magazine, we spoke to four people about their experiences of working with cystic fibrosis. While some were able to turn setbacks into new opportunities, others faced discrimination and difficulties along the way. Here you can read their full stories and find some useful advice if you have faced similar issues yourself.

Rob

Depending on the job I do, I have different ways of managing my CF treatments. When I first started work at the age of 16, I was lucky that my CF treatments were all tablet-based, and the nature of my work was slightly physical, so the exercise came naturally.

Traveling with CF 

In 2002, I started working in a position that involved a lot of travelling and hotels – not ideal for someone with cystic fibrosis! That was when things started to deteriorate. I had six admissions, a port fitted, and a reaction to a drug, which caused tinnitus, slight deafness and CF-related diabetes. I had never really mentioned my condition to my employer before then, and luckily they were very understanding and found me an office-based job close to home. After a tough couple of years, lots of admissions, daily nebulised antibiotics and three monthly IVs, I had my condition under control.

In 2008 the company I worked for merged with another, so I had to move to a new company. This also meant relocation, and a new CF clinic. When I moved I had a stable lung function of around 80%, and I was doing well managing my twice-daily treatments. But my new job had more pressure and travelling, and while I was improving and was taken off regular IVs, my lung function did drop to 70%.

An understanding employer

In 2014, I went back to a job with travelling, high pressure and long hours. This job has taken its toll. Over the last few years, I have had poor chest clearance, I haven’t been good at managing my blood sugars, and my lung function is down to 40%. My CF team have talked about me cutting down my hours or stopping work altogether so that I can spend at least four times a day managing my condition. I’ve been lucky – my employer is understanding with me taking time off, and has allowed me to work from home. But I know I have a big decision to make!

Since this interview, Rob has retired and has been listed for transplant. Find out more about transplant in cystic fibrosis and download our transplant booklets.

Zanib

I always wanted to go to uni, but my aspiration to become a pharmacist came from being on the ward as a child. I was always asking questions about my medications and the pharmacist was so knowledgeable and friendly. Pharmacology also involves a lot less patient contact than other medical professions, which limited the risk of infection. I never worried about the future when I was younger, or if I wouldn’t be able to do something. I always wanted to do this.

I had a difficult phase when I was doing my GCSEs. I was very unwell and ended up in hospital for about a month and a half, so I didn’t sit them at all. The GCSE results were a bit upsetting as I worked really hard. I decided to take a different approach for my A-Levels - I did them over a three-year period instead of two. My headteacher was really understanding. She was the one who first suggested to do them over a longer period - I didn’t know that that was an option before. When my friends started to leave for uni I felt a bit behind and rather upset, but I just focused and had more time to look after myself and get prepared for university.

Telling my friends about CF

I was open about my CF at college and uni. My friends knew and I would answer any questions people had if they asked but I didn’t make a big deal out of it. Even the words ‘cystic fibrosis’ are difficult words, they sound horrible, so people don’t always understand. Sometimes, if I’m meeting a friend of a friend or something, I’ll just tell them that I have asthma because it’s easy, but once I get to know someone better, I’ll tell them, ‘yeah, I’ve actually got CF’.

For college and uni I stayed home. Me and my family are close knit, and I didn’t want to commute as I knew it would get quite tiring and could make my bad days worse. Moving out required a lot of independence and responsibility that I don’t think I was ready for!

I imagine other people with CF might feel apprehensive and wonder if there’s any point in going to uni. But life expectancy has got so much better now, people are living to 50 or 60, so you’ve just got to live your life. My advice for young people choosing their options would be to be positive but also be realistic about your health and the future. I’d say, don’t compare yourself with others, especially people who don’t have CF. As someone with CF I’ve had a slightly different journey to my friends, don’t let this alarm you. You’re unique!

When it comes to treatments, don’t let them go out of the window, I learnt that the hard way. Whilst your studying balancing both can be a challenge, but your health should be your priority and you should not let anything get in the way of it! So making sure there is a good balance between your health and studies is important.

Chasing my ambitions

I was ambitious to do four A-levels and a four-year degree plus a pre-registration year. I didn’t think that my health would change, but it did. It was really hard work. I nearly dropped out in my second year of university, but family support helped me through it, and I’m proud to say I got a 1st at uni. In life, there are big hurdles that could happen to anyone, even someone who doesn’t have CF. It’s just the way you see it – you have to be positive. I did have set backs but I tried to persevere.

Every time I thought “what’s the point?” I’d knock sense into myself and think, “you can do this, look at how far you’ve come”. I always say nothing is impossible! Even impossible says “I’m possible”. I was very fortunate to have a very supportive family and the CF team at Wythenshawe hospital have been fantastic throughout my journey. I would not have been able to achieve my ambitions without all the amazing people who have supported me.

Zanib has since qualified as a pharmacist.

Laura

I am 24 years old and was diagnosed at the age of three. I was placed on ECMO, a lung dialysis treatment, and my family was told that I was not going to make it, so I am very lucky to be here. My health is generally good but I do have to be treated for infections around three or four times a year, and I do have occasional hospital admissions. My family and friends are very supportive and encouraging.

I should start by saying that I enjoy working and meeting other people. It makes me feel normal and like I am no different from anyone else. Until I get home, then the treatments begin again (if I have time).

Encountering ignorance

I have worked from the age of 17. My first job was in a department store working part time. I then moved to a DIY store, where I was eventually offered a full-time position, but the job started to take a huge toll on my health. I lost a lot of weight as I was working alone most of the time, running three departments by myself with no time for breaks, and sometimes waiting six hours before I could take my lunch. I was constantly getting chest infections and having time off, which didn’t go down well with my manager, who threatened to sack me if I had any more time off over the following six months. It made me cry, because I really enjoyed my job and my colleagues were like friends. My manager didn’t understand my condition and said that I was using it as an excuse.

After being admitted into hospital three times in two years, which broke my record of not being admitted for five years, I found a better job in an office where I slowly gained my weight back and felt comfortable. I was made redundant from this a year later, and had to spend a month looking for a new job while my money slowly deteriorated. Hospital trips were costing me £20 a time, keeping my car running was a huge expense, and I had to pay off my bills.

Last year I found an agency job at a local council, which I initially thought was administrative, but was instead as a post room worker. Constantly walking up and down flights of stairs (six in total) is really hard, and being on my feet all day is taking its toll on me (not to mention waking up at 5am to fit in treatments, travelling for an hour to start work at 8.30am and not getting home until 5.45pm). I come home knackered and do not have the energy to do anything apart from eat and go to sleep.

After falling ill for a couple of weeks, my boss scheduled a meeting to say she was concerned but that as I work for an agency it was up to them to provide a fit person to work, and that if I say I am no longer able to do the role they will have to replace me. This was upsetting and unfair, and I was told to speak to my agency and get a medical assessment done as soon as possible. An argument went back and forwards between my agency and my manager, as neither wanted to spend the money to send me for the medical assessment that I was told I needed. Eventually we had another meeting and I was asked what adjustments could be made. I told them that if I could leave earlier I would be able to fit in more medication in the evening and maybe feel better and more able in myself. My manager told me she wouldn’t make the adjustments, and instead said that I could leave the job at any time, which was hurtful.

Changing my job

I will soon have a new job at the council that has less hours, better pay and isn’t physical. Since I got my new role, the medical assessment has not been mentioned and my manager is acting as if nothing ever happened. I have been coming to work even when feeling unwell and not sleeping very well due to rough nights.

With regards to home life I am currently struggling to fit in all medicines and work as nothing has changed. I cannot afford to be part time or not work and have not been accepted for Personal Independence Payment. I am fighting this and am waiting for a tribunal date.

If you have been affected by the issues raised in Laura’s story, find out more about how you can receive support on our page on work and cystic fibrosis and download our employment factsheet.

Michelle

Today, I have a four-year-old daughter and my own law firm, but when I was younger I just wanted to be Ally McBeal and only had myself to think about. Keeping on top of my treatments was easy – I often went to work with my long line in my arm and administered my meds at lunch time. I had a very well-controlled routine that I wouldn’t change for anyone.

Reasonable adjustments 

A few years later, I worked for a firm in the city that wasn’t particularly understanding of my condition. After three lengthy absences, I was permitted to work from home on a Wednesday, but I felt like an exception to their way of working and the arrangement didn’t work. When I left, my health improved.

According to the Equality Act 2010, employers are required to make reasonable adjustments for any employee who has a disability, and there can be serious repercussions if they don’t. Employers therefore often play lip service to the idea of reasonable adjustments to avoid liability, but anyone with a condition like CF will know that you can only really flourish at work when you feel genuinely accepted.

I’m very lucky to own my own business, with an understanding director and shareholder and wonderful, caring, hardworking secretaries. If I am out of breath they meet me at the door and carry my bags. If I am absorbed in a piece of work, they remind me to eat. Client meetings can become a problem when I have a chest infection, and I am not able to work during IV treatment anymore, as they make me too ill. These days when I have hospital admissions I generally arrive at the hospital and flop onto the bed.

Juggling work and home life

My daughter is a blessing and I remind myself every day how lucky I am to be her mum. However, having a little person to wash, feed, dress, and keep safe and happy every day throws a hand grenade through any attempts to keep a routine, and taking care of both of us whilst keeping clients and staff happy requires constant, world champion-level juggling.

When I win a trial that will change a client’s life I think it’s worth it, but some days I’m just tired. As I approach 40 and read articles referencing the average CF life expectancy of 47, I do think that if Ally McBeal had been required to manage CF and a small child, the writers may have had her change focus by the time she reached my age.

You can read more of Michelle’s work on her blog or follow her on Twitter @LawyerMumWithCF.

Natalie

Employers may tell you that “health comes first,” but often it seems insincere: something that HR have told them to say so that they don’t get sued for neglecting occupational health. Or, even if they do believe it, perhaps they just don’t have the resources or authority to make “health first” a reality. One thing’s for sure: you should never let it get to the point where your health declines before you or your employer starts valuing it. With that in mind, last year I quit my job.

I had spent the last two years working for a major marketing agency. I loved almost everything about my job, but I think I always knew that it wasn’t sustainable. During big projects I’d finish in the early hours of the morning or have to work through the weekends. While I always was proud of the amazing work we achieved, I began to realise it was at the sacrifice of my long-term health.

Ever the optimist, I’d always plan to leave work on time, at 6pm, to workout at the gym and then go home, cook and do my treatments, but often, sometimes just a few minutes before I was going to leave the office, something ‘important’ would crop up. For every extra minute that I’d spend in the office, I’d become more anxious. For every extra minute that I stayed in the office, that was one less treatment I could do to keep myself alive. And when I’d finally get home, sometimes hours later, I was so exhausted from the logistical nightmare of re-planning and re-prioritising my treatments that I’d rarely do anything more than sleep. Even though this didn’t happen every day, I was always on edge thinking that it might.

A rude awakening

During one particularly stressful period, I had a routine CF clinic appointment. Thanks to a lot of hard work my lung function tests had always been consistently above 100% and something that I’m really proud of, but after months of stress and cutting corners on my healthy habits, I wasn’t feeling confident about my lung function tests...

First attempt. I hardly cleared 80%. The next blow was a bit better, but not by much. I decided that if I didn’t hit 90% that day, I’d quit my job. Last attempt. 89%. I kept that promise to myself and I haven’t looked back since.

Leaving my job

I still feel like I’m paying the price for all the stress that I put myself through, but after just two weeks away from the office, working out every day and completing all my treatments, my lung function was already back up to over 90%.

Today I’m a qualified personal trainer, Chief Marketing Officer for Pactster and am an associate lecturer in marketing for a university. With a flexible lifestyle I feel much more in control of my health and I’m determined to keep challenging myself to push my lung function back towards triple digits.

Follow Natalie on Twitter @_nataliejohanna or by visiting her website, where you can read her original blog.

Work and cystic fibrosis

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