My story and why I’m choosing to be brave on Rare Disease Day
To mark Rare Disease Day (February 28) Corrinne from our Digital team shares her story of living with Addison’s Disease and the life-changing help and support she has received from friends, family, and her colleagues.
My name is Corrinne, I’m 33, and I’m a Junior Delivery Manager at the NHS Business Services Authority (NHSBSA). I’m responsible for delivery on Help with Health Costs – an essential service provided to the public by the NHSBSA.
My journey started in 2008 as a temp in the NHSBSA Contact Centre processing European Health Insurance Card (EHIC) applications. It was meant to be a stopgap between finishing my degree in psychology, but instead, I stuck around. Over the next 10 years I trained up on additional services and progressed from Contact Centre Agent, to Advisor, then Deputy, and finally to Team Manager in Citizen Services. I assisted in the roll out of Loss Recovery Services and it gave me a flavour of project delivery. When the junior role came out it was the opportunity I’d been looking for.
I moved over to the NHSBSA’s Digital team in 2019 to pursue my new career in agile and digital delivery. I’m passionate about delivering great services and being able to give something back. I love the blend of working with a team but having the autonomy to make my own decisions and scope to be creative. This job gives me purpose and focus.
So why am I telling you this? Well, throughout my career, I’ve been living with Addison’s disease – a rare dysfunction of the adrenal glands which stops the production of cortisol and aldosterone. It is a long-term health condition and life threatening. I take medication three times a day as a minimum to replace my cortisol and aldosterone levels and need to be extra vigilant if I become unwell. Having this condition means I have to be constantly aware of any developing symptoms which may be a sign of adrenal crisis (when the levels are too low and my body starts shutting down).
I was diagnosed at 16 with this auto-immune condition and have learned to live with it, but in recent years I have needed urgent hospital care. In 2020 I became very unwell and I spent May and June being rushed into hospital for treatment. I am forever grateful for the quick action of my flatmate who administered my emergency injections and in doing so saved my life. However, I was completely alone when I was in hospital due to the restrictions in place for COVID-19 without any visits from family or anyone to advocate for me. When you have a rare condition this is essential as not all medical professionals have knowledge of it or how to treat it.
The after-effects were tough. I couldn’t walk unaided for some time and I also experienced problems with my speech, memory, and attention span. I was too weak to look after myself and had to move back to my family home. I didn’t know what my future held or if I even still had one.
It’s taken a lot of patience and determination on my part to rebuild my life and I’m blessed to have friends and family who helped me stay positive. However, I owe my successful return to work to my Digital management team and their continued support. I’m thankful they didn’t give up on me when I was ready to give up, and instead celebrated every step forward.
Another challenge with Addison’s can be the fatigue which results from daily activities and exercise. I’m hopeful this improves as I get stronger, but being able to work flexibly lets me balance my work with my health needs. Adjusting my working pattern allows me to perform to my best and returning on reduced hours meant I could return to work earlier than if I was working full time. I’m so grateful to be equipped to work from my family home until I can safely return to the North East – hopefully it won’t be too long, but we’ll see how things go.
I’m really proud of what I’ve achieved since returning to work in November and I’m driven to progress. I’m continuing to receive great opportunities – in January I passed my ScrumMaster certification after completing two days virtual classroom training, which in itself was a mini-milestone. I’m now focussed on regaining my general fitness and looking at how I can play a bigger part in raising awareness for Addison’s disease. I’m also looking forward to life after COVID-19 and being able to enjoy events like gigs again.
It’s always been my goal to be a strong lead, so in the words of Professor Brené Brown, I’m choosing ‘courage over comfort’. Addison’s disease doesn’t define me, and I’ve never let it stop me from succeeding, but it is something I carry with me.
I’m choosing to be brave and share my story in the hope that it not only helps to support those living with rare diseases, but also inspires someone not to give up when life throws them a heavy curve ball. I also hope it will open the door to future employees who might not have been aware of the career prospects available to people working within Digital Services and the team’s commitment to supporting all their people.
For more information on Addison’s disease how you can support Rare Disease Day, please visit: https://www.raredisease.org.uk/
You can read more about my personal story on the Rare Disease website.