For as far back as I can remember, I’ve had infections that no one could explain. I would pick up illnesses all the time and remain sick for much longer than the ‘normal’ person would. When I was in my late teens, I had constant bacterial infections and was told by numerous doctors that I had low white blood cells, but that it was nothing to be concerned about. It wasn’t until I got a new doctor that I was advised I had a neutrophil count of 0.01 and that this definitely was not normal. I was sent to a haematologist, had a bone marrow biopsy and a lot of in-depth blood tests. I was then diagnosed with severe chronic idiopathic neutropenia.
Severe chronic idiopathic neutropenia impacts my life in a lot of ways. I’m cautious about being around people who are unwell because if I became ill, it would likely mean a trip to the emergency room, as fevers can be dangerous because I don’t have much of an immune system. I am chronically tired a lot and just generally don’t feel ‘well’ most of the time. I’m also on an injection, which for me, causes severe bone pain, nausea, headaches as well as cold and flu-like symptoms. I take this fortnightly and have to plan my social life and work around the injection due to the bad side effects I get, which can last a few days.
As for the pandemic’s impact on me, I’m thankful to have a job that enables me to work from home. I also feel better about the situation now that I’m fully vaccinated. However, early on in 2020, I was definitely cautious and asked to work from home as soon as my workplace had the necessary systems in place. I also didn’t go out often as there were a lot of cases in South Australia. This meant I didn’t see my family and friends and organised to get everything delivered to my home so that I could minimise the risk of catching COVID-19 and being severely unwell. This has made me feel isolated at different times during the pandemic.
For me, the biggest challenge I face living with severe chronic idiopathic neutropenia is the stigma and judgement around it. I feel weak or judged whenever I need to take a day for me. I also feel there needs to be more awareness of rare diseases in general. A lot of the time, I have to educate health professionals about my condition. I think there is also a need for more support financially and mentally for rare diseases. Medications are expensive, having a rare disease is mentally taxing and it’s hard to manage full-time work and have no sick leave left.
