Being chronically ill can be challenging in the best of times; so what is like to have a chronic illness during a global pandemic? A few words that come to mind for me when I think of the last year and a bit and my experience of the healthcare system (specifically in Australia) and hospitals are isolating, strange and difficult.
Before the pandemic, patients were allowed to have people join them in the emergency department. A visit to ED can be very overwhelming so having a loved one there as and advocate and support can be incredibly important. During this past year I've had more than my fair share of ED visits, some lasting an entire day before I was either admitted or sent home. Without a loved one by my side I have learnt to write notes in my phone of my symptoms, what the doctors tell me and any tests they take. When you're not feeling your best it can be hard to concentrate and remember things so, without someone by my side to help, this has helped me keep everything organised and make it easier to talk to my doctors about everything thoroughly.
In most wards where I live the visiting hours run for most of the day and are quite flexible. Before COVID you were allowed to have multiple people visit you during one day and those visitors could change as well. Since the start of the pandemic that has completely changed. Visiting hours are minimised to a couple of hours at strange times of the day and patients are only allowed to have the same two people during their entire stay or even just one visitor a day. I have found this extremely isolating. If my chosen visitors (my mum and sister) had to work away or had meetings after work that would mean that I was left without visitors, sometimes for multiple days in a row. We are very lucky to have things like FaceTime to feel close to our loved ones but nothing really compares to a big hug from my mum.
One thing I have noticed during my various ED trips and admissions is how incredibly kind and supporting the nurses, doctors and hospital staff have been. I was on a relatively small ward during my last admission and found that even the doctors that weren't my own would stop and ask how I was going on my walks around the ward. The nurses would pop their head in and check on me even if I wasn't their patient that day, they would hold my hand and give me warm hugs when I was struggling and make me laugh in between. The kitchen staff would continue to chat with me and check in even though I was practically nil by mouth. It has been incredibly hard not being able to have the people I love by my side during the hardest times, but boy have I been lucky to have the hospital staff.
Having a chronic illness during this global pandemic is rough, but I can guarantee you that you that you are strong enough to overcome anything it throws at you. You've got this.
If you have a loved one with a chronic illness, check in with them around what it has been like for them during the pandemic. Ask questions and be present.
My next post will be about how you can support someone who has a chronic illness, subscribe below this post to be notified when it is published.
Sending you all love,