COVID-19: An immunocompromised person’s perspective

Edit | This was written 12 March 2020 using the most up-to-date, government advice and links that I could find in New Zealand but please do your own research. Advice is changing on a daily basis.

Watching the COVID-19 epidemic, now pandemic, create so much panic has been a really interesting thing for me to watch.

As a person who would sit in a higher risk patient category in a currently low risk country (New Zealand) where some people have been stockpiling toilet paper and hand sanitiser, I have to say…. what in the world is happening?!

I have a Primary Immune Deficiency (PID) and Bronchiectasis which is a respiratory disease – a wonderful combination that doesn’t pair well with Coronavirus.

So why am I not afraid? Why am I not panicking as much as other people? Why am I not bunkering down?

I have a theory.

The thing is that everything they’re telling us to do to stay safe is literally the sort of things that I do every single day to stay safe. It’s also what I need from others to keep me safe from potentially life-threatening illnesses.

So what I’m wondering is, what has everyone been doing until now?! Not washing hands? Not staying at home when sick? Not disinfecting surfaces? Not coughing into tissues?

That is terrifying to be honest.

Everyone doing these actions all the time is important to people like myself who are immunocompromised, or the elderly, or very young folks. This is how we avoid getting sick as much as possible.

When people EVER cough or sneeze around me, I feel a mild panic, because the flu can kill vulnerable people and I really don’t want to be a statistic. But I don’t panic by buying toilet paper – I cover my mouth and move away from that person.

And try reeeally hard not to put their fingers in my mouth. It’s hard work, but someone’s gotta do it.

If I lived my life with the fear that some people currently have, I wouldn’t be able to leave my house. But I do. All the time.

It’s like people are suddenly seeing the world the way myself and my PID friends experience it and they’re so damn terrified, when this is just how it is for us 🤷‍♀️

What I want people to know is that, if you’re not in the vulnerable group of people, we still need your hygiene to prevent the spread, but you can probably chill a little on the panic (if you have anxiety or anything of that sort, that’s a different thing).

I understand that it is reasonable to be afraid, especially if COVID-19 has hit your area, however, the excessive panic is not helping the people who are in the most need.

If supermarkets run out of soap because perfectly healthy people bought it out, what does that leave the people who need it more? Just buy a couple – sharing is caring.

Continue living as you were but take those extra precautions suggested by health organisations. Continue going to the gym, cafes, bars etc if you are not in lockdown, just remain mindful of your surroundings. (Right now is probably the safest time for me to go to these places because everyone is so conscious of hygiene! 😆). And I hope you still go on holiday if your travel insurance will cover you and if there are no travel bans.

You can’t not live your life because you’re scared of a virus that you’ll probably fight off, in the terribly unlucky chance that you even get it in the first place.

And when this whole scary pandemic blows over, maybe still wash your hands for 20 seconds. If not for yourself, for those people whose health and safety relies on it.

Remember, we’re all dying, you could get hit by a bus, and life is to be enjoyed.

To the at-risk folks out there, continue to take precautions, and check in with support groups and your medical team to know what special advice is recommended for your specific needs.

Much love to anyone who is scared right now, I feel ya.

Charlie

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6 thoughts on “COVID-19: An immunocompromised person’s perspective”

  1. Well written as usual. Not so worried about you now because you have made it sound so simple. May actually make your life easier.. or will people quickly forget the simple hygiene rules when Covid disappears?

    1. Thanks Dad! Weirdly, I do think it will make my life easier. For now at least. Fingers crossed the learnings stick around long after the fear dissipates 😊

  2. Hope you don’t mind me getting in touch.

    Just wanted to say a huge well done to you for the blog.

    Like you I decided that the best form of defence against my auto immune illness ITP was going to have to be attack.

    I was diagnosed with the rare auto immune illness ITP 14 years ago and it floored me to be honest. I had never been ill before in my life and at 46 then, I was utterly baffled, bemused and bruised (literally).

    Like you I set up a blog – http://myownpurplepatch.simplesite.com and have been working since 2011 as a volunteer for the ITP Support Association here in the UK.

    Anyway, I just wanted to say hello and hat’s off to you .

    Keep up the good work.

    It is always inspiring reading & learning about other conditions & realising that we are all in similar auto immune boats. We may be rare but we are many !

    Best wishes
    Anthony
    @Patch1Purple

  3. I am also immuno suppressed following a heart transplant 28 years ago. I am still trying to continue with my life but am left wondering if people will continue to carry on following basic hygiene rules.

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