Living with an invisible illness in the time of COVID-19: Point of View

This pandemic is the pits for everybody. It's taking a toll on our physical and mental health and destroying economies around the globe. And that's just the lighter side of things.

Thousands of people have died, and we just don't know when it's going to be over.

When I was approached about doing a followup to last year's piece about having an invisible illness, this time as someone with an invisible illness during a global pandemic, my first thought was, "But who cares?"

I thought about it for a bit and then two things convinced me to write this.

First off, as someone with a compromised immune system, I am more vulnerable to the coronavirus, and my reaction to COVID-19 has a greater chance of being either serious or deadly.

And second, I can draw a connection between what I go through daily to what you're going through right now in the midst of this pandemic.

What my day-to-day looks like

First, some background. I have a blood cancer called polycythemia vera (PV for short).

It means that I produce too many red blood cells; I have thick blood which can lead to clotting, heart attacks, stroke and can develop into leukemia. That's my invisible illness.

My treatment includes oral chemo twice daily, low-dose Aspirin once daily, and phlebotomies (blood draws) when my red blood cells rise above their optimum level.

As a result, chief among my concerns during the COVID-19 outbreak is access to treatment, including blood technicians and same-day treatment department staff at the Queen Elizabeth Hospital for blood tests and phlebotomies.

So far so good, and in my book, the professionals who put themselves at risk to provide us with essential services deserve our admiration and appreciation. Thank you to all of you.

Soon, I will be going back for blood work to determine whether or not a phlebotomy is required. The fact is, I expect things to be close to business as usual, but with added precautionary measures.

Let's talk about stress

More worrisome to me is the supply of the chemo pills that I require. Pre-pandemic, we'd already experienced a shortage of hydroxyurea, and I know people who had to go without this potentially lifesaving medication for some time.

Now, for reasons I respect such as potential shortages and the possible need to redirect medications to other areas, I worry that the pandemic-dictated 30-day supply sitting on my medicine cabinet shelf may be the last I see for a while. Still, we'll cross that bridge when we come to it, right? Again, so far, so good.

The insidious thing about stress is that it can feel like it's gone, like you've got it under control, when in reality, you're creating the perfect breeding ground for all sorts of horrendous things.— Dave Stewart

Despite my faith in the skills and availability of the team of medical experts that keep me going, what I think about most health-wise in terms of having an invisible illness is stress.

I used to think that I handled stress like a boss. Terrible things would happen and I'd plow right through them like a World Wrestling Entertainment champ. Out of sight, out of mind, right? Turns out, no.

The insidious thing about stress is that it can feel like it's gone, like you've got it under control, when in reality, you're creating the perfect breeding ground for all sorts of horrendous things. Stress can take a toll on our health — both mental and physical.

What makes you more like me

See, I think most of us are feeling a deep stress right now, even if we're not aware of it.

Stress doesn't always feel like what we think it will feel like. Sometimes, it feels like having things under control.

I also believe, to a degree, those (few) Islanders not following social distancing guidelines are doing so out of a sort of stress, a worry that shows itself as denial. For some, taking a risk is better than accepting the stress of reality.

But that's all part of accepting an invisible illness. It's what we're all being asked to do right now, I just have a head start on most of you.

The fact is, we can't see COVID-19, we haven't seen its worst effects here on Prince Edward Island. Not yet, and hopefully we won't. But while it lasts, you've been asked to follow a health plan, you've been asked to adapt, to make changes that provide for a best case scenario.

Welcome to the world of invisible illness.

As somewhat of a semi-pro in this area, let me leave you with two pieces of advice.

Check your stress, everybody, and follow our health plan. It's our best chance of staying well.

This column is an opinion. For more information about our commentary section, please read this editor's blog and our FAQ.

COVID-19: What you need to know

What are the symptoms of COVID-19?

Common symptoms include:

• Fever.
• Cough.
• Tiredness.

But more serious symptoms can develop, including difficulty breathing and pneumonia, which can lead to death.

Health Canada has built a self-assessment tool.

What should I do if I feel sick?

Isolate yourself and call 811. Do not visit an emergency room or urgent care centre to get tested. A health professional at 811 will give you advice and instructions.

How can I protect myself?

• Wash your hands frequently and thoroughly.
• Avoid touching your eyes, nose and mouth.
• Clean regularly touched surfaces regularly.
• Practise physical distancing.

More detailed information on the outbreak is available on the federal government's website.

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