It is a scary time for everyone, but living with a chronic illness is an extra thing we have to deal with over the top of it all.
We are already home most of the time and our lives can feel like one big lockdown that never ends. However finally others have experienced this too due to the pandemic. They have had no choice but to stay home this year during lockdowns and may actually now be more understanding of what it feels like when our health prevents us from doing anything.
We are often housebound and lonely. This makes us feel worthless when our lives stand still. We feel trapped in an endless cycle that never ends. Now that healthy people have experienced this, it can help us explain more easily what it has been like for us forever. That this is what our normal is.
The problem is we are often ridiculed for staying at home and being anti social despite it sometimes being a necessity with chronic illness. At least for those without health conditions, they can return to normal life and move on when this is over.
Workplaces would rarely agree to let people work from home if you were feeling unwell and now suddenly it has become the norm. Where was the support before the pandemic?
The biggest problem with the pandemic is the fear and anxiety. My fibromyalgia has already caused a lot of mental health issues and now it has been pushed to the extreme. Even though my condition does not technically hinder my immune system, I already have flu symptoms weekly where my body fights against itself, and every time I now panic that I may have the dreaded virus.
I also have older parents with some health issues and have a fear I will pass something onto them. I am hypervigilant about everything now and very aware of the importance to wear masks, social distancing and sanitising hands.
My anxiety is always high and I’m always terrified of hearing the latest news in case things suddenly change or hearing the death rates. Everything has become a mental health trigger.
I’ve been back at work a few months now but I work in a theme park so was off for several months. When I went back it was a shock to the system as I had barely any flare ups at home but felt I just wasn’t achieving much in life. Being back at work, I had a massive flare up of fatigue as I was so unused to the constant work and socialisation. Work is my social life as well as one of my biggest passions so it was great to go back, but equally scary.
I had been at home in my own safe bubble with family for so long. I felt comfortable and relaxed at home, but the stress of returning to a fast paced environment where you have limited control over others was hard.
I’ve gotten used to being back and we have to wear face masks and take extra precautions which has helped massively. I have realised I cannot control others but I can control my own safety and I focus on that.
I have practiced some meditation, relaxation and breathing techniques which also help. It is just about controlling your situation to the best of your ability and speaking up if you do not feel safe.
For me, it has been much easier to speak to a doctor as I don’t have to wait weeks for an appointment. I can often speak to a doctor on the phone on the same day as requesting an appointment and I don’t have to see them in person anymore.
Thankfully the pandemic has put things into perspective for a lot of people and the community has been a lot more accepting of health conditions since. The problem is, what happens when things become the new normal? Will we still have the support? Will there be a push for mental health or will it take a step backwards?