I have long COVID — and this is what it's really like

Julia Ranney recounts her frustrating experience with long COVID, and offers other sufferers a glimmer of hope.

·6 min read
I tested positive for COVID-19 in January 2023, and have been experiencing long COVID symptoms ever since. (Photo courtesy of Julia Ranney)
I tested positive for COVID-19 in January 2023, and have been experiencing long COVID symptoms ever since. (Photo courtesy of Julia Ranney)

This article is for informational purposes only and is not a substitute for professional medical advice, diagnosis or treatment. Contact a qualified medical professional before engaging in any physical activity, or making any changes to your diet, medication or lifestyle.

On Friday, the World Health Organization announced that COVID-19 is no longer a "public health emergency of international concern" — but for Julia Ranney, who suffers from long COVID, that's not the case. Below, Ranney shares her story:

Every morning, I make an effort to write three things I'm grateful for, and one thing I will focus on in the day ahead.

I've been doing this for many years, as it helps me to re-wire my brain and direct my attention to all the wonderful things life has to offer — big or small. It could be as simple as a beautiful butterfly landing on my balcony railing, or as significant as receiving my Master's degree after a couple of years of hard work.

When I began my gratitude journal, I was lucky enough to have excellent health. Quite often I'd write about how thankful I was to have tons of energy, a clear mind and well-oiled joints.

Little did I know that my health would be taken away from me at a moment's notice.

I tested positive for COVID-19 in January 2023. For two weeks I was completely out of order, finding the most basic tasks such as brushing my teeth or getting dressed a challenge. My energy was zapped. I had a raging headache. I'd wake up every night either freezing to death or so sweaty that I'd have to change pyjamas.

Positive COVID test on a black table, leading to a difficult journey with long covid
My positive COVID test has led me on a difficult and demanding health journey, but long COVID has taught me about the importance of taking care of both your physical and mental health. (Photo via Julia Ranney)

Three weeks after getting infected, I was back to life as I knew it. My energy returned, I was back in the gym and I socialized with my friends and family as if nothing ever happened. I considered myself one of the lucky ones, as thousands of Canadians have been hospitalized or died at the hands of the virus.

However, my luck quickly ran out — and my body crashed.

The extreme fatigue made it difficult to get out of bed and I had a tough time showering or getting dressed. Whenever I stood up, I got extremely dizzy and my heart rate spiked to the point where I'd almost pass out. Throughout the day I'd get hand rashes, chest pain, heart palpitations and panic attacks. I had no idea what was wrong with me, but I knew it wasn't normal. Long COVID never crossed my mind, because I had recovered — or so I thought.

In a particularly bad bout of chest pain, my brother took me to the hospital in Stratford, Ont., where I was visiting family at the time. I was put through a series of blood tests, X-rays and had an ECG. Everything came back normal. When I asked the doctor why I was experiencing these distressing symptoms, he only had one explanation: Long COVID.

 long COVID hand rash with tiny light red splotches on Julia Ranney
One of my long COVID symptoms is persistent and uncomfortable hand rashes. (Photo courtesy of Julia Ranney)

According to the World Health Organization (WHO), long COVID occurs when mental or physical symptoms of the virus occur for more than three months after infection. The symptoms must last for at least two months and cannot be associated with other conditions or causes.

In October 2022, data released by Statistics Canada revealed that approximately 1.4 million Canadian adults had symptoms of COVID for at least three months post-infection. However, there seems to be no clear way of diagnosing or treating long COVID.

In the days that followed, I was angry and agitated. Why is this happening to me? How long will it last? What treatment options are available? Unfortunately, due to the new and changing nature of long COVID, the doctors didn't know how to treat it, and they had no clue if it will be permanent or temporary.

Long covid symbol. Doctor turnes wooden cubes and changes words 'covid' to 'long covid'. Beautiful orange background, copy space. Medical, covid-19 pandemic long covid concept.
Long COVID affects many Canadians across the country, and many sufferers can feel alone and helpless. (Photo via Getty Images)

The only thing anyone had an answer to was my dizziness and heart rate issues.

As a result of COVID, I developed POTS (Postural Orthostatic Tachycardia Syndrome), a condition that causes symptoms when transitioning from lying down to standing up, such as fatigue, dizziness, nausea and a rapid heart rate. The treatment plan includes increasing salt and fluid intake, wearing compression garments, trying slow and monitored exercise as well as moving slowly when going from lying down to standing up. Avoiding heat is also recommended, as it can trigger changes in blood pressure and heart rate which causes fainting.

At this point, I hit rock bottom. I felt frustrated, alone and helpless. All my life I had been used to certainty and answers, and for the first time, I had none. I felt left behind by the medical profession like so many other long COVID sufferers.

Thanks to the support of my family and friends, I knew I had to make a change and take matters into my own hands. I went online and found a virtual long COVID treatment program for residents of Ontario, which has helped both my COVID and POTS-related symptoms.

woman reading a book and holding a mug of hot beverage recovering from long covid
Making time for self-care and rest has been essential in my long COVID recovery journey. (Photo via Getty Images)

I recognize that I am privileged to have access to such care, as I know that not everyone is as lucky as I was. But there are several things I did that have helped me feel better and cost nothing at all. For example, I wrote sticky notes with uplifting quotes and stuck them around my apartment. I stopped Googling "long COVID" because the data I found online only made me feel worse.

Instead, I made time for self-care activities like catching up on television shows or re-reading my favourite books.

For one of the first times in my life, I allowed myself to rest. Like, really rest. I was a certified couch potato, and I let go of all expectations of myself. Once I did that, I felt my nervous system starting to regulate, and I felt more positive about life.

I learned about the importance of taking care of my mental and physical health, and that I don't have to be pushing my body to its limit in order to be a successful person.

One of the reasons I wrote this article was to offer a beacon of hope for other individuals affected by the condition, and to let them know they aren't alone.

While I still have a long way to go in my recovery journey, I do feel considerably better than when I was first infected. Long COVID sucks, but there's hope.

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