Meet inspirational Suffolk youngster Christen Savage who doesn’t let having cystic fibrosis hold her back

Christen Savage (Image: Archant)

What is it like being disabled in the world of work – and especially living and working through a pandemic? Gina Long talks to Christen Savage, who has cystic fibrosis

Could I have an overview of your condition please?

Cystic fibrosis is a genetic condition that effects over 10,000 people in the UK. The disease effects the movement of salt and water in and out of the body’s cells, resulting in a thick sticky mucus in the lungs, digestive system, and other organs. Luckily I am only majorly effected in my lungs, which results in regular and significant lung infections that require daily treatment, hospital stays and lengthy IV treatment.

Tell me about your life growing up in Suffolk…

We moved to Suffolk when I was baby, and have always lived in and around Bury. My brother, sister and I went to boarding school, which I think made us love Suffolk even more as it has always been a retreat for us – from school, university and now from work! I was fortunate in terms of my CF whilst growing up, as (very unusually) I was diagnosed at 16 rather than birth. That may not sound like a good thing – but it meant my childhood wasn’t filled with pills, nebulisers, physiotherapy and worst of all being labelled as ‘sick’.

What are your memories whilst in education?

Christen Savage. Picture: Charlottte Bond (Image: Archant)

I loved school - from my tiny catholic prep school through to boarding at senior school. I put pressure on myself academically, which caused stress, but mostly I had fun with friends who I still am close to today. University was the happiest time of my life so far. I had slightly lost interest in academia, but met amazing friends and loved every second. My CF was pretty insignificant as I had decided not to tell anyone. Of course people found out, but for a long time it was under wraps and easy for me to just enjoy myself.

What challenges did you have to overcome?

My biggest challenge was my diagnosis. After a rough year or two with multiple haemoptysis (coughing up blood), I was diagnosed in early sixth form. Not only did I need to come to terms with this myself, but I also had to manage my friends’ reactions. It was hard to take on board and ultimately I just buried my head in the sand and acted out. Suddenly I was failing exams, scrapping plans for university and definitely not abiding by the rules. Luckily, deep into my final year, I decided I wasn’t going to let this one bit of me rule my entire life.

READ MORE: Meet disabled Suffolk youngster Chris Wright

How would you describe the support given by your family?

Generally, they follow my lead which I imagine is not always easy – but is exactly what I need. During my “head in the sand” years, they allowed it, knowing I needed it, and since have really supported me. There are, unfortunately, endless day-to-day things that they have put up with and selflessly committed to - my mum going to every single hospital appointment or scan, late night calls to my brother in a panic or our countless trips to A&E together, my sister committing three months of her life to entertaining me every single day while I went through a particularly long treatment, or my step-dad driving hundreds of miles to make sure he sees me every day of a hospital stay (even if I’m unconscious). They sacrifice a lot to support me, which I am extremely grateful for.

And friends in later years until now?

My friends blast through any excuse I make, or issue I try to ignore, and make me tackle it head-on. They constantly try to learn more about the disease, what the changes in medicine are and how they can help me. They are very, very active in their support and I love them for it.

What has been the impact of the COVID-19 pandemic in your life?

It was no surprise that Covid was going to pose a serious threat to me, so I retreated to Suffolk early on with my siblings and the whole family committed to nearly six months of shielding. The biggest impact was being taken away from my friends and normal life.

Being put in the shielding group came at a strange time for me as it was contrasting with other elements of my CF life. I had just been put on a new drug, Symkevi, and I was close to the end of training for the London Marathon. I was feeling healthier than ever, whilst also being told I was one of the most clinically vulnerable people in the country. Mentally that was incredibly hard to deal with.

Has it changed your perspective?

I think it has reinforced my existing perspective. Whilst obviously there is a threat to everyone with Covid, hiding away and protecting yourself to the point that your life is unrecognisable isn’t healthy. That is how I feel about my CF in normal life.

How have you found the workforce attitude towards you and in the broader terms?

I’ve found it to be very cautious and considered. It’s a hard line to toe, dealing with an individual who has a severe illness. You don’t want to focus on it, but simultaneously you cannot ignore it. I think generally employers err on the side of caution and focus heavily on it, which is difficult as you try to make your way in the professional world.

If you could change one thing about an employer’s attitudes to disabled people, what would it be?

To be less check-box and HR-led. Whilst I appreciate there is a legal obligation to ask certain questions, it becomes very impersonal. Often it feels like people don’t care about you so much as they care about not being sued.

What are your challenges personally and professionally?

My biggest challenge is the pressure I put on myself to keep up with people around me. This is challenging at the best of times, but there is also the underlying threat of an infection that takes me out for a couple of weeks, or even months. It often feels like two steps forward, one step back. Whilst work is pretty understanding, it is frustrating for me as it slows my development.

Are there any day-to-day frustrations you would like to share?

There are day-to-day struggles that I have had to face, particularly at work where I try to be more discreet about the CF. For example, days off for monthly clinic, needing to wear a long sleeved top in baking heat to hide an IV line, hiding in meeting rooms to actually give myself IVs, trying to mask coughing fits in meetings, or worse, realising I’ve coughed up a bit of blood in a meeting, or even the panic of people coming in to work with a cough or a cold (and this was before Covid!).

What does Suffolk mean to you?

Suffolk means home. Even though I spend most of my time in London these days, I love retreating back to Suffolk.