Community AA Voices - personal stories Being diagnosed with aplastic anaemia during a pandemic The pandemic has hit everyone hard. Unfortunately for me, my diagnosis in March 2021 made everything that much harder. At a time when most people were looking forward to the end of lockdown, I found myself having to completely isolate for my protection. Keeping busy When I was first admitted to the haematology ward I found it hard to keep my spirits up, as I knew I wouldn’t be allowed a visitor. There was however, a huge emphasis on using mobile phones. All the nurses and doctors were encouraging patients to use them to keep in touch with family and friends. I took advantage of this and had multiple voice and video calls almost every day. During the times I was left to my own devices, I’d distract myself with colouring books, reading books, mobile games, and whatever decent day time TV I could find. I found most comfort in my colouring as this kept me calm and occupied my mind for hours on end. Going it alone Under normal circumstances you’d be allowed multiple visitors to come onto the ward into your room to see you daily. If you were going for a routine appointment on the day unit, you could have a visitor sit with you to help pass the time. However, due to the restrictions visitors have been prohibited from the ward and the day unit. It was only under special circumstances that visitors were allowed. Going to consultations on my own has also been difficult, mainly because of all the information you are expected to digest. It’s hard to take it all in. I found myself feeling confused and unsure, but it’s totally normal to feel that way. In these situations it was useful to get information sheets directly from my consultant or nurse. I also found it helpful to write everything up in my medical diary afterwards. On some occasions I was able to have a family member listen in via a phone call. This would often have to be a pre-arranged appointment, but it was particularly helpful as it allowed me to discuss what had been said afterwards with my family member. I’m due to be transferred again for my treatment to London Kings College hospital and have been told I’ll only be allowed one designated visitor. My chosen visitor would receive a visitor’s passport and they would have to have a COVID swab every time they came, but they would be able to see me daily, which I’m really thankful for. Finding support The nurses and health care assistants (HCA’s) were amazing with me. They would check in on me regularly through the day and would often come have a chat, keeping me company for a short while. As I was in and out of hospital so frequently, I soon got to know the nurses and HCA’s very well, which was nice as it felt much more personal. The topic of choice for most of our conversations usually involved cats (being a proud cat Mum myself). It’s been a surreal experience from the start. Going through all this in a global pandemic hasn’t been easy, but the support I have received from family, friends and especially the NHS staff has kept my spirits up. There’s still a long way to go on my journey to recovery, but with restrictions eventually easing and visitors now being allowed in some hospitals, things will get better in time. Hey! I’m Ellen – Normally I’m a Marketing Project Manager for a Life Science company. At the end of March 2021 my life changed when I was diagnosed with severe aplastic anemia (SAA). Read more from Ellen Read more AA voices AA voices AA voices is a collection of blogs in which people affected by aplastic anaemia share the stories they feel are important, in their own words. If you would like to tell your story here, please get in touch with Ellie, our Comms and Fundraising Manager, by emailing [email protected].