Depression

For the last three years, Covid long haulers have had to become their own advocates and researchers as they lobby for recognition, funding and proper healthcare. Their knowledge has been hard-won against a backdrop of sickness. They’ve pushed through symptoms that ravaged their previously able-bodies and become the experts of their own disease.

That is why we decided that all the symptoms on this website should be written by patients, for patients. As our co-founder Jenene Crossan says “They poured their hearts, their souls and their deep determination to find just enough energy to put their experiences down for others to benefit from”.

Although we do not intend to give medical advice, the articles have been fact-checked by a wonderful doctor who is suffering from Long Covid too.

About the author

When I was 27, I developed Kowheori Roa | Long Covid despite being in the best shape of my life. My passion for home workouts and running kept me active and healthy. I cherished my independence, yet socialising with friends on weekends and going on road trips also brought me great joy. I found fulfilment in pursuing creative hobbies such as sewing and singing.

Since Covid-19, the shape of my life has changed dramatically. The mental and physical effects have left me mostly housebound and unable to drive. Socialising is largely reduced to casual text messages and exercise is no more than gentle yoga. Long Covid also meant I had to leave my job, which I adored, in the music industry. This is perhaps my most profound loss, as I had finally found a career I loved.

While I am starting to make slow progress towards recovering, I really miss these fundamental parts of who I was. Life with Long Covid now involves pacing, resting and appreciating the small things.
– Female, NZ European/Māori, Tāmaki Makaurau/Auckland

A brief summary of depression and Long Covid

Depression is a complex mental health problem that can present in various ways, and affects every person differently. Depression and Long Covid have some similar symptoms, so it’s important to understand a few things up front:

Being unable to moe | sleep and feeling fatigued are defining features of Long Covid as a disease, so you could have these symptoms and not actually be depressed. It’s important to understand this difference when deciding on the best treatment.
Difficulty concentrating, thinking clearly or making decisions (aka brain fog) is very common in Long Covid too. Brain fog is also present in depression.
Feeling down in the dumps or even hopeless are perfectly normal emotional responses when you have Long Covid. It’s a relentless, chronic illness with significant and unpredictable physical symptoms.

So when depression is mixed with the complexities of Long Covid, it can feel difficult to gauge which issue is causing which symptoms.

Depression can affect anyone and doesn’t necessarily need a cause. However, a stressful event or life change, such as contracting Covid-19 or dealing with Long Covid, can trigger depression. A study discussing the implications of Long Covid on mental health found that depression was prevalent in patients 3–6 months after initial infection.

As the physical effects of Long Covid can prevent people from engaging in many normal parts of everyday life, the grief this causes can trigger depression or a sense of helplessness. The Mental Health Foundation of New Zealand describes depression as a lasting low mood, which affects several areas of your life, including sleep, social relationships, career and appetite. These are some of the main symptoms to look for:

sadness, emptiness or feeling down in the dumps
irritability
moe | sleep changes and increased tiredness
difficulty concentrating, thinking clearly or making decisions
feelings of worthlessness
feelings of hopelessness.

While depression can occur from the stresses and challenges of living with Long Covid, it could also occur due to changes in the brain due to inflammation caused by Covid-19 as this study shows.

In my experience

I’d struggled with depression in the past, and felt myself slipping into that familiar cycle at the end of 2022. After my second infection, I experienced such debilitating fatigue and weakness that I ended up almost bedridden. Missing out on Christmas, New Year’s and a fun summer with those I love was crushing.

Most days felt really hopeless as the weeks of inactivity rolled on. Some incredibly dark thoughts crept in as I wondered if I would ever get better. I spent several nights crying myself to sleep, as nothing felt within my control.

In the past, I’ve been able to break out of the depression cycle with things like exercise, activity or connecting with friends. But Long Covid’s physical effects prevented me from engaging in life as I normally would. I had several days where I just wanted to give up. It was as if nothing could make me feel better.

In January, I faced my heaviest loss as it became clear that I was unable to return to mahi | work. I’m still not sure I’ve dealt with the grief. The loss of a career, a job I loved, a supportive team and a role I felt passionately about has left a huge hole. For a while, it seemed like the only things to fill that hole were whakatā | rest, TV, worry and more rest. Long Covid completely turned my life on its head. Every day felt the same as I rode the wave of troubling thoughts about the future and resentment about my situation.

However, as I’ve come to accept my circumstances and learned to resist intrusive thoughts, my mental health has started to improve. But its fragility still remains the hardest part of this Long Covid battle.

What others say depression in Long Covid is like

It’s important to remember that although some people may have experienced depression at points before catching Covid-, the ever-changing and uncertain nature of Long Covid itself is often a precursor to depression.

Long Covid and the depression that has come with it have been described as “dark” and “lonely” by many. A deep sense of grief is also common. Many people are mourning who they used to be – being “outgoing and energetic”, “a social extrovert who loved to chat and engage with anyone” are among the descriptions.

“Depression, panic and anxiety have taken over most waking moments of my life. It’s like someone has flicked a switch, and I can’t turn it off. For 12 months and counting, I feel like I don’t know who I am anymore.”

– Clare

The sense of loss and the uncertain nature of Long Covid are the most notable features. One person describes part of their depression as being “unsure if I’ll ever be completely better or able to do the physical things I did before at the gym”. Another expressed “fear of what is wrong with me, what will become of me, and grief for who I was”.

Long Covid has stolen important parts of people’s lives. It’s left a sense of emptiness and isolation for many as they come to terms with their new normal.

What I have tried

Talking to a psychologist really helped to validate my feelings and provided me with helpful resources when I was feeling too unwell to find my own. With my psychologist, I tried cognitive behavioural therapy, and acceptance and commitment therapy.

I also tried meditation, journaling and doing a creative hobby (when possible). Watching a lot of funny YouTube videos to get some happy chemicals into my brain helped too.

Reaching out to my friends and family was important, as this tautoko | support system helped validate my feelings.

What others have tried

These practical aids and tips have helped others in New Zealand’s Long Covid community:

Keeping a ‘thought’ diary can help challenge uncomfortable thoughts. When you have these, write them down, then assemble all the evidence for and against the particular thought. Often we’ll find that our brains are catastrophising and getting carried away.
Schedule things you enjoy into your week/day. This might be catching up with friends for dinner or over FaceTime, doing some painting/colouring, watching a favourite show or cooking a favourite meal. By scheduling, we give ourselves small things to look forward to, exercise some control and promote positive feelings.
Apps can be incredibly helpful tools. There are several free meditation apps such as Insight Timer, where you can find meditation and breathing exercises. John Kirwan’s Groov app is a handy mental health tool, and the Catch It app is beneficial for working through unhelpful thoughts.
Mindfulness: this doesn’t have to be sit-down breathing meditation. Try being mindful while cooking a meal, washing dishes or practising yoga to bring your mind back into the present.
Movement releases feel-good endorphins in our brains, which enhance our sense of wellbeing. Gentle stretching, such as yoga or pilates, or a short walk if possible, will work well.
Start a gratitude practice. Studies have shown that practising gratitude can lower depression and improve moe | sleep and mood. Keep a daily journal and include three things you’re grateful for each day.
Practise good sleep hygiene. It’s well established that poor sleep can have an impact on mental health. Unfortunately, Long Covid and depression may make it even harder to fall asleep. These tips will help your body get into whakatā | rest mode before bedtime.

See a counselor. Sometimes talking to someone can help with those dark thoughts and feelings. Talk to your GP about free sessions – that might be enough to help you, or it will be a good start.

This PDF from the Mental Health Foundation has some useful tips.

The best advice I received

The most helpful advice I got from many therapy sessions was that not everything is in our control. Disagreeable and unproductive thoughts can inspire change, but accepting these negative thoughts can be important too.

Also, acceptance opens up opportunities. When we accept where we are and that hard days happen, we relieve the pressure about not being where we want to be and can begin to better care for ourselves.

My therapist recommends a book on acceptance by Dr Russ Harris called The Happiness Trap.

How others can help

“I’m here for you if you ever just need to talk.” Such a comforting phrase. Sometimes it helps simply to have a friend listen, whether that loved one pops over or chats on FaceTime. It is reassuring for us to know that tautoko | support is there.

Be understanding of the ever-changing nature of both Long Covid and depression. There will be good days and bad days. Your flexibility makes it easier for us to handle the symptoms.

Support Group and Helplines

Sometimes it can be very difficult living with depression but you don’t have to be alone. Our Long Covid support group is a caring supportive place to connect with other people who understand.

These helplines can also be valuable when you need someone to talk to.

Need to talk? Free call or text 1737 any time for support from a trained counsellor.

Lifeline – 0800 543 354 (0800 LIFELINE) or free text 4357 (HELP).

Youthline – 0800 376 633, free text 234 or email talk@youthline.co.nz or online chat.

Samaritans – 0800 726 666

Suicide Crisis Helpline – 0508 828 865 (0508 TAUTOKO).

Healthline – 0800 611 116

Clinical information

A 2015 study found that although anxiety, depression and ME/CFS may share biological features, the present evidence indicates that CFS is a distinct disorder. The study used MRIs to examine brains and assess differences.

ME/CFS and Long Covid share many similarities. Medical researchers are currently studying the brains of people with Long Covid, and they’re finding that there are definite changes in grey matter and white matter. The brain changes may relate to emotional processing, among other issues, but it’s too early to say for sure.

Seek professional help

Don’t hesitate to speak to a therapist or counsellor if you’re struggling. The understanding a professional offers can be hugely beneficial. Also, they should be able to offer tools and suggestions to āwhina | help you start feeling better.

Talk to your GP, or see the Mental Health Foundation’s list of free services.

DISCLAIMER: THIS WEBSITE DOES NOT PROVIDE MEDICAL ADVICE

Content shared on this website is for informational purposes only. It should not be taken as a substitute for professional medical advice. Always seek the advice of a qualified healthcare professional regarding a medical condition, diagnosis or possible treatments. Long Covid Support Aotearoa is not liable for risks associated with using or acting upon the information provided on this website.