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What it feels like to live with an invisible disability

There are an estimated 11 million people in the UK with an invisible disability -- a physical, mental or neurological condition that is not visible from the outside, but can limit a person’s movements, senses or activities. I am one of them.

2020 was an unexpected and terrifying year. Nothing happened how we expected it to. For me, my 2020 began with an asthma diagnosis. My diagnosis wasn’t a surprise, it was a relief. I’d always had worries about my breathing (I even had an asthma diagnosis as a child), so it was reassuring to know there are ways to make my life easier. I, like many others, wasn't expecting to deal with my new diagnosis during a pandemic.

1 in 12 adults are currently being treated for asthma. I knew I wasn’t alone. In the first lockdown I only went out to exercise so I didn’t have any concerns for my health. I was almost certain that I was safe. I spent that time working out what my triggers were and speaking to other people with asthma. It was challenging trying to do that at a time where I didn’t leave the house because I didn’t know how my breathing would be when we were finally able to go about “normal” (or the new normal) life.

Difficulties began for me when wearing a mask was introduced. As an asthmatic and glasses wearer, it was incredibly challenging. I had to find a way to breathe properly whilst also stopping my glasses from steaming up. This created a lot of anxiety around leaving the house, and that anxiety made it 10x harder to breathe.

For a while, I couldn’t physically wear my mask all the time. I would always try to begin my outing (usually to the supermarket) by wearing one. I sacrificed my sight to keep it on because of how afraid I was. Part of that fear was definitely a fear of catching COVID-19 because I (like everyone) don’t know how COVID will affect my body. However, a huge part of my fear was the judgement of others. I look fine, like the only thing wrong with me is an unwillingness to wear a mask, when actually that wasn’t the case at all. When I needed to give myself a quick 5-10 minute break from wearing a mask, it was to get my breathing back on track.

I spent the summer of 2020 carrying my inhaler around like a security blanket so people would know that I wasn’t just trying to get out of wearing a mask. The dirty looks and stares were unbearable.

Thankfully I have now managed to find a way that is about 80% effective in allowing me to breathe efficiently and not steaming up my glasses whilst wearing a mask. I feel safer both in terms of the virus and in terms of the judgement from others.

However, judgment still prevails. Mask-shaming has turned to vaccine-shaming, particularly online. People feel the need to know exactly why someone who looks young and healthy has been offered the vaccine before older people. That mindset is completely disregarding those with incredibly serious underlying health conditions (such as cystic fibrosis).

Therefore, it is so important that we respect and show as much understanding to this group of people as we would any able-bodied person. Whether someone has a disability that prevents them from wearing a mask or they have a disability that means they are in a higher category for the vaccine, we should treat everyone with kindness and respect.

Asthma UK has loads of amazing resources for people like me who are trying to understand their diagnosis.

This month's GGM UK podcast is all about invisible disabilities, shielding and COVID. Please listen here if you want to find out more about how 2020 and COVID have impacted people with underlying health conditions.

AUTHOR: Orla McAndrew

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