Starting again: Wayne’s story
When Wayne Culyer’s CTEPH symptoms worsened, he made the difficult decision to leave the job he’d been in for 38 years. Just a few weeks after he took medical retirement, he and his wife Kathy shared their thoughts and experiences…
“I had always planned to work until state pension age. Up until four years ago, there were no problems, but since being diagnosed with PH, every year it got harder.
I was diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) in December 2018 after not feeling right for a long time. I’m on oral medication, and there’s possibility of surgery as a last resort. I’m always tired and out of breath, and I’m always cold.
Since the age of 20, I’ve worked in a factory that makes paints and varnishes, doing a lot of lifting and carrying. It was a very physical job; I would have to lift between two and three tonnes of powder a day. There’s a glass roof, so it was a like a greenhouse, making it especially tough in the summer months.
When I was first diagnosed with CTEPH, I had 13 weeks off sick, luckily on full pay. I then went back on a phased return, increasing my hours gradually over a period of eight weeks until I was back to full time.
It felt alright at first, but it then started getting harder and harder. My bosses made allowances at the beginning, for example limiting how much I had to lift, but because I looked ok – the illness can’t be ‘seen’ – they forgot about it all and it was soon back to the same routine.
They tried to move me onto night shifts and that made me really poorly. I was in a routine with my medication, and it turned my body upside down.
My colleagues, who are also friends because I’ve worked with them for so long, could see that I was struggling. They helped me a lot, but there was only so much they could do.
One really hot day last summer, I had a medical assessment at work which showed my blood pressure was sky high. I told the assessor I’d been struggling to breathe because of the heat, and he said I needed a lung function test, but I’d have to see my doctor. I did, and was signed off sick.
Kathy and I had to sit down and have a discussion about what to do from there.
After I’d been off for three months, and my full pay went down to Statutory Sick Pay, my employers asked me to decide between coming back to work, or leaving on ill health grounds. Going part-time wasn’t an option financially.
In December 2022, after being on sick leave for six months, I officially left work on ill health retirement. I had come to the decision that I just couldn’t do that job anymore. They couldn’t offer me anything other than heavy lifting, so there was no other choice.
It’s taking me a while to process everything that’s happened, but I have definitely felt better physically since finishing work. I take the dog for a walk every day, I’ve got a season ticket for my football team, and Kathy encourages me to get out to see my dad or go to the shops.
I need the encouragement, the pushing sometimes, to do something and keep my body going. I’m lacking a bit in motivation, but I think I’ll want to go out more in the summer, as I struggle with the cold.
I do feel a sense of relief after finishing work. I’m not getting up at 5am, with my body still aching from the day before, feeling unable to even get my socks on.
My advice to anyone in a similar situation to me is to talk about it. Talk to people at work, talk to your managers, and let them know how you feel and what’s going on. You can’t ‘see’ PH, so they won’t know otherwise.
And talk to your PH team for advice on it all too; they’ve been brilliant with me. I didn’t like talking to people about it, so I kept it to myself, but I wish I hadn’t.”
“I remember Wayne coming in from work that day last summer and just saying ‘I can’t do it anymore.’ His body was telling him he was done.
It was so hard for him after 38 years in the job. It was his life, and his colleagues were like family. But his health is more important than wealth, which is what we told his employers.
Until the PH, Wayne had never had any time off – and after he was diagnosed, he wanted to go to work and remain ‘normal’. He didn’t want anything to change, but it had to.
During the hot summer of 2022, he was doing his shift, coming home, and that was it. He was done in. He couldn’t eat and couldn’t even visit our grandkids. It was impacting everything, and it was very difficult.
We spoke to one of the nurses at Wayne’s specialist centre and she advised us to think hard about work/ life balance. But it was still difficult to let go and make a final decision.
We did have to talk about things a lot. He’s only 58, and he’s not going to get his state pension until he’s 66. Ill health retirement has left Wayne with less than half of what he was bringing home each month when he was working.
I was made redundant last year and because I had my redundancy pay, we didn’t feel as financially exposed. But without that, goodness knows what we would have done.
Wayne needs some time to process everything now, and we need to think about what we’re going to do as a family. I’m looking for a new job, and we’re looking into what benefits we may be entitled to.
It’s all so new to us, but we are where we are. We’ve turned a page, and we now have to think about where we go from here. We just need to start a new chapter and look positively towards the future.”
If you’re struggling to work with PH, please speak to your specialist team for advice.
We also recommend you discuss all your options with your employer, and research what benefits you may be entitled to. This will help you make an informed decision about your future.
Scope, who strive for equality for disabled people, have a dedicated helpline offering advice about issues including employment. You can call 0808 800 3333 or email firstname.lastname@example.org.
We understand that you may be facing difficult decisions. You’re not on your own!