My disability story - what it's like to work and live with a long-term health condition

As I write this, the first thought in my mind is to recognise the struggles associated with a ‘disability’ label; both the way I identify with it and knowing the negative connotations others take from the word.  My disability is relatively new to my life; it’s part of me now, but definitely does not define me.  It’s still odd for me to accept that my long- term debilitating health condition is officially recognised as a disability. As time goes on, I have learnt to embrace it and wear it with pride.

In 2006, aged 35, with a blossoming career, a lovely husband of 10 years and a beautiful young son, my life was ‘on track’.  Out of the blue - or at least it was to me - following a string of medical events, came the diagnosis of Hodgkin’s Lymphoma.  I distinctly remember being sat in the specialist’s office and asking; “is that cancer?” Of course, it is.  It’s a blood cancer; “one of the best to get” explained my well-intentioned Doctor, meaning it was often treatable, and for me there was a 75% chance of recovery.  For anybody who’s been through this experience (1 in 2 of us will), you’ll know that the worst part is not only coming to terms with the diagnosis and the horrific treatments, but sharing that news with your family. For me, this included my parents (who were both still alive at the time; sadly, my mum’s no longer alive), my husband, and my beautiful son.  You want to shield them from the pain, but the reality is you can’t.  One year later, following out-patient chemotherapy every other week, then radiotherapy daily for a month, my treatment was over, the cancer was in remission, and we could all go back to ‘normal’.

But life is never quite the same.  You’ve been through a trauma, and trauma leaves scars.  But I got up and we got on, changed - much less confident and always just a bit scared. But all was well in our world again.

During a routine check-up 5 years later, my new normal came crashing down around me. I was given the devastating news that, despite feeling relatively well and looking okay, the cancer was back, and this time it was far more aggressive. The only treatment option available was a stem cell transplant.  Having a now 14 year old at home, with access to information at his fingertips, was the saddest part – to watch him struggling to come to terms, worrying if his mum was going to die, retreating into his own bubble and experiencing his own debilitating anxiety was heart-breaking. I was taken into an isolation ward for months-long, completely awful in-patient treatment; harsh chemotherapy, blood transfusions, invasive painful procedures to insert and take out tubes to my veins, with very limited contact with anyone, particularly the outside world, while the transplant preparation, procedure and recovery took over our lives.  The summer of 2012 is not one I’ll forget...

Now, with hindsight and a different perspective on life, I can see the positives: the strength of love, of family, friends and the miracle of science.  I write this from a place of full recovery, 8 years post- transplant - a happy place.

Although the treatment has left me with life-long physical challenges, due to fibrosis caused by the radiotherapy, a rare skin condition, scarring to my heart and mentally the ever-present (usually at the back of my mind) fear that every ailment is something more sinister, our lives are good, lived to the full, with thanks, delight and gratitude for each new day and every new challenge. I have an innate strength and confidence that propels me to say ‘yes’ and put myself forward even for scary opportunities.

Getting to this place of peace has not been easy.  I’m changed.  I returned to work too quickly after my first bout of illness in my rush to ‘go back to normal’, but it wasn’t the same – I wasn’t the same. Some colleagues were fabulously supportive and kind, while others looked at me with sympathy, even avoided talking to me.  After the second bout, having taken another year off, I went back this time more gradually, and much more accepting of the new and different me.  When an opportunity for voluntary redundancy came along, after 20 years, the time was right for a change.  Fast forward another two years and the opportunity to work in rail came my way.

Working in construction was a fresh start, nobody knew my history, I could just be me, and chose not to share with my new employer; I didn’t want to be labelled or judged.  I didn’t know the culture and was nervous of a negative reaction.  The first 6 months were tough - new people, new industry, even a new ‘language’ - so many acronyms!

I realised that I needed a more flexible way of working to allow me to be productive and stay well, so I shared my story with my then line manager with a great deal of trepidation.  That was the best thing I’ve ever done!  The support, empathy and understanding I received has been and remains brilliant!  I have been encouraged to share my story widely to support the vision and values of a great place to work with an environment of belonging, respect, value and understanding.   My experience in construction is so positive, and I visualise an industry that leads the way on inclusion; this is one of the main reasons we felt compelled to get together to launch Construct-Ability - so that colleagues and organisations could access reliable peer support, guidance and information and we can normalise the conversation about disability. We also want to support greater understanding for fair and equal opportunities where different abilities are encouraged and valued.

Having a positive mindset and sunny outlook, despite the dark clouds at times, is key for me.  It’s easier said than done - there are sad days and bad days - but with love and support and a reminder to myself of all the blessings I have, I grab life and all it has to offer with full vigour and great optimism for a fabulous future. I also want to support and encourage others to have the same positive experience, outlook and opportunities as me.

I have so much to be grateful for, and so much love and joy in my life; a partner of over 30 years, a grown-up son who graduated last year and has recently started his first ‘proper job’ (in construction!), fabulous friends who are my family, and a wonderful job where I can truly be my authentic self.  I consider myself to be very fortunate indeed.