“Do I retire and live, or work and die?”

“When I was diagnosed with PH, I had just one more year to go until I would be on the next pay grade in my role as Head of Food and Catering, teaching GCSE and BTECH courses.

This leap in pay would have provided me and my children the financial stability we needed, and I had worked so hard for it. The diagnosis of idiopathic pulmonary arterial hypertension was a bombshell and my hospital recommended I finish work straight away.

I said I’d think about it, and I seemed to stabilise over the summer period, so I thought I’d be ok to carry on. However, I went back into school in the September to a massive workload and later that month I blacked out for the first time.

School put me on sick leave, and I liaised between my occupational health team, HR and my teacher’s union, as I was under immense pressure to get back to work because of GCSEs looming. Four months after the first one, I had another blackout, just resting at home, so things were getting worse for me, and I was going downhill fast.

I had to sit down with my children and partner and decide what I must do and how I was going to manage. I had a big mortgage hanging over my head and debts too. My decision was made instantly by my family: Do I retire and live, or work and die? It was that simple really, but very scary.

Keeping hold of the house

I was really burdened with thoughts of how I would keep hold of my home of 27 years. As you can imagine, it was a very tearful and stressful time for us all.

My partner, who I’d not long known, said he would help and support us – but I am a proud independent person, and that couldn’t happen. However, the stress of it all led to my need to be assessed for a double lung transplant and I felt I’d gone down a very dark tunnel and I wouldn’t make it out the other end.

Once I realised all this was happening, I quickly arranged to meet my financial advisor, as he had helped me numerous times in the past, to see what could be done.

It was like an angel from God appearing. As we’d always been updating my mortgage and critical illness cover over the years, he’d not long put me on a new cover. It was based in the USA, and it recognised PH at stage three or above, which I was. I couldn’t believe it! My mortgage was cleared, and that was the first turning point for me. I’m a strong Roman Catholic and truly believe I was helped in my hour of need.

I still had my other debts, but because I had the support of my family, financial advisor, and my teacher’s union rep, I was really looked after.

Leaving work forever

I had some acrimonious meetings with school at first regarding my leaving, but finally they agreed I could leave on the grounds of ill health. I received enough pay when I retired to pay off my debts. I retired in September 2013 and suddenly it hit me – what do I do now, I’m only 54? No more work for me and how do I survive now… if I live?

This is when I joined the PHA UK and I’ve never looked back. They listened first and foremost, and put me in touch with organisations which would be able to help me at this stage.

I had worked all my life since the age of 18, but now I realised I needed help. I found I could apply for various benefits and mainly, I found there were lifelines out there waiting to help someone like me.

I muddled through what was at times extremely stressful stuff – form filling, providing evidence and so on, and I waited for outcomes.

Once I’d found out what I was entitled to, and what money I had coming in each month for the rest of my life, I had a sit-down with my family and together we made decisions, as we have always done.

My own childhood was typical large family – working class and quite poor. We had to cope and now I live with the same morals and values regarding what’s necessary or not, and I’m managing very well.

I don’t live beyond my means, and I’m blessed each day. I live for my meds working, the amazing PH team in Sheffield, the PHA UK and my family and friends, without whom I am nothing! I wouldn’t mind winning the lottery though, so I could share it.

The benefits of hindsight

Looking back, I should have stopped work as soon as I had a diagnosis, and it was recommended I should. If I’m honest, I didn’t believe I was so ill. My meds seemed to work, and I thought I’d beaten it, but PH doesn’t allow you that honour. My financial situation also influenced my decision, as I imagine it does for lots of PH patients. We don’t have a magic wand unfortunately.

In honesty I would say the first two years since retiring were the most stressful. I felt guilty not working as people would say I looked too well to be ill.

However, giving up my work has given me my quality of life back. I worked very long hours as a chef and then as a teacher, working most weekends too.

Now I can see my family and friends and I have time. I don’t worry about work and the stress related to it, and I laugh and – on the good days where I feel well enough – I have fun more than I ever did. That’s good enough for me.

Looking ahead

I now see my life as living, and not just surviving work. I get to see my children and grandchildren and if I’d carried on working, I’d probably not be here now. My daughter says that I’d have died with the stress of my teaching job, never mind PH, and she’s got her mum’s back.

I do believe I’ve made the right choice and I’m happy with my choices and smile and pray every day. There is a light at the end of that dark tunnel and it’s shining!”

Julie’s advice for others making difficult decisions about work:

• Talk to your specialist team and listen to them always.

• Talk to your family and close friends as they really do know you and they do matter.

• Seek help and advice and never think that your query is silly – it never is! Use all channels available to you through your job, including HR, Unions, and Citizens Advice Bureau. 

• Join the PHAUK as they’re an invaluable source of constant, reliable help and advice and support.

• Liaise with other PH patients through social media etc, but remember – it’s got to be your decision.