What is Long Covid? | He aha te Kowheori Roa?

Kowheori Roa | Long Covid is a condition where people continue or start experiencing symptoms after the acute Covid-19 infection is over.

How long people end up living with Long Covid ranges between months and years. The intensity can vary from uncomfortable-but-manageable to completely debilitating. Some Long Covid patients can still live their life but at a reduced capacity, while others are entirely bedbound and struggle to even take a shower, brush their teeth or feed themselves.

What are the symptoms of Long Covid? | He aha ngā tohumate o te Kowheori Roa?

There are more than 200 possible symptoms. Some of the most common include:

  1. Fatigue: many people with Long Covid suffer from extreme exhaustion that is not relieved with moe | sleep or whakatā | rest.
  2. Post Exertional Malaise (PEM): most people find their symptoms worsen after any physical or mental exertion.
  3. Breathing problems: instead of breathing being an automatic process, individuals with Long Covid can find it exhausting and laborious.
  4. Brain fog: this is a catch-all term for intense neurological symptoms such as memory loss and concentration issues.
  5. Postural Orthostatic Tachycardia Syndrome (POTS): issues with the body’s automatic functions, such as heart rate and blood pressure.
  6. Insomnia: people living with Long Covid often find it disrupts their sleep. Despite their exhaustion, they also have difficulty falling asleep or staying asleep.
  7. Gastrointestinal symptoms: nausea, diarrhoea, bloating and abdominal pain can range from uncomfortable to debilitating.
  8. Joint and nerve pain: nerve pain and inflammation in the joints is a common symptom.
  9. Loss of smell and taste: some people experience a long-term loss or distortion of these senses, which can be very traumatic.

For more information about these and other symptoms, you can check out articles written by New Zealand Long Covid patients.

Is there any treatment? | He rongoā?

At present there is no cure for Long Covid, but some people do make spontaneous recoveries with time. Treatments and lifestyle changes can help with many of the symptoms. Most patients agree that the most important factor for recovery is rest. Kōrero | Speak to your doctor about possible medications to help with your symptoms.

Bear in mind that because no one knows the root cause of Long Covid, doctors can only treat each symptom separately. However, scientific findings are starting to centre around the importance of the immune and metabolic systems in what’s happening.

A girl with her dog on a beach, an activity not possible for many people living with Long Covid.
<em>Getting out to enjoy a sunset can involve monumental effort for many living with Long Covid Photograph Jenene Crossan<em>

What can I expect? | He aha kei mua i taku aroaro?

Every patient’s journey is different when living with Long Covid. The wide-ranging nature of symptoms and intensity means there’s no one-size-fits-all experience. Moreover, people have different lifestyles, and levels of financial security and family support, which all affect how they manage the illness. Here are a few things that are consistent across most people’s journey:

  • Recovery is not linear. It is often only in retrospect that you can see progress. The illness can manifest as a pattern of relapses, which often makes progress hard to gauge.
  • Prioritise rest. Pushing through it and continuing to exercise/work will most likely set you back. The more you can rest your body, the better.
  • Physical conditions such as Long Covid can also affect your mental health. Common feelings include isolation, loneliness and anger. A hankering for your old life and grief for what your life could have been is normal. Speaking with a trained professional can help people adjust to their new circumstances.
  • Expect backlash. The invisible nature of Long Covid means you can often be met with disbelief and ridicule. This has happened to many others with similar conditions for decades, and is one of the reasons why patient groups have to be so vocal. The rhetoric of “Everyone I know has had Covid and is now fine” is often used to counteract Long Covid. The truth is, most people struggle to admit they have Long Covid, and doing so can lead to discrimination. This was the case for journalist Jennifer Senior of The Atlantic. When she confessed to a peer at the New York Times about her Long Covid struggle, he responded, “Is that the excuse everyone at The Atlantic uses when they’re unproductive?”

What should I do? | Me aha ahau?

  1. Kōrero | Speak to your doctor. In an ideal world, they will be empathetic and take you seriously. However, many Long Covid patients experience medical gaslighting and are told their symptoms stem from anxiety. Keep a detailed record of your symptoms so you have written proof of your illness. If you can, bring someone with you to the appointment who can advocate on your behalf. In New Zealand, “Long Covid” is now able to be selected on the medical database as a reason for ongoing sickness. Enquire about possible medications and ask for referrals to specialists.
  2. Talk to your employer about reduced working hours. Contact WINZ to see if they can offer any financial support if needed.
  3. Gather a good Tautoko | support network. Connecting with other Long Covid patients can alleviate feelings of loneliness and anger. Long Covid Support Aotearoa’s Facebook group provides sound practical advice for managing the illness.
  4. Know you are not alone. We aren’t here to offer toxic positivity, but we do believe it’s important to have hope and find ways to stay positive.

5. Look after your mental health. There are several ways to manage your mental health while living with Long Covid. Read our blog post for more information.