Anxiety

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

I am a wife, a mother, horse lover and traveller. Prior to getting Long Covid in my mid-40s, in September 2020, life was full. I homeschooled my kids, rode my horse, hiked around our farm, walked on the beach, went to church, and spent time with friends and family. Since contracting ME/CFS from Long Covid, I spend most of my time resting and cannot do the things I loved.

My initial Covid-19 infection was mild and I recovered completely. However, a few weeks after my quarantine finished I developed intense fatigue, crippling headaches, anxiety and nausea. These symptoms were so bad they rendered me bed-bound for months on end.

It has now been two years and while I am better than those initial months, I still struggle a lot.
– Female, NZ European, Tūranga-nui-a-Kiwa/Gisborne

*“Jumping Out of Your Skin” by Tracey Thorp*

A brief explanation of anxiety and Long Covid

There are two aspects to Long Covid anxiety: the biological response, caused when Covid-19 dysregulates the neurological system; and the psychological response, a natural reaction to navigating life with a newfound disability.

It is important to know that anxiety is a symptom and not a cause of Long Covid. Some medical professionals claim (without evidence) that Long Covid is psychosomatic (physical symptoms caused by worry). But you do not need to accept anxiety as a diagnosis for your Long Covid symptoms.

Biological response

Anxiety as a biological response is caused by damage to the autonomic nervous system (ANS). The ANS controls automatic systems in the body, such as temperature, heart rate, breathing and responses to the external environment. In a healthy body, the ANS responds to danger by flooding the body with adrenaline and increasing your heart rate. This means you can very quickly respond to the threat.

Unfortunately, with Long Covid this system can become over-reactive. We can then get into fight-or-flight response for things that are not a real danger, and it’s difficult for the body to settle down again.

This can lead to symptoms of anxiety, which include:

feelings of panic
nausea
increased heart rate
breathlessness
jitteriness
sweating
feelings of ‘electric shocks’ through the body
changes in bowel movements, such as diarrhoea.

Psychological response

Of course, the other aspect of anxiety in Long Covid relates to the fear we feel about our health. It is completely natural to worry about the future when you’re dealing with a chronic illness. Questions like ‘What if I don’t get better?’ ‘How will I pay my bills?’ ‘How will I look after the kids?’ are reasonable, and can cause a lot of anxiety.

You can deal with the physical symptoms of anxiety caused by worry through breathing techniques, vagal-nerve exercises and observing your thoughts. However, it’s also important to manage the thoughts causing this type of anxiety. There are tips for this further down the page.

Sometimes it can be really difficult living with anxiety. If you need help please talk to your doctor or call a helpline to talk to someone.

In my experience

I was very anxious during my initial months with Long Covid. Little things, such as hearing a message arrive on my phone or the doorbell ringing, would make my heart race and induce panic. Tension headaches, chest pains, nausea and diarrhoea would exacerbate my anxiety. Every morning I would wake up shaking, so much so that sometimes I thought there was an earthquake! Even now, two years later, I still shake a little upon waking up.

Although I understood Covid-19 caused these sensations of anxiety and that my body was over-reacting to any small stressor, it was still distressing. As the weeks went by, I became very scared that I couldn’t get my Long Covid and anxiety under control. I couldn’t look after my family or my horses, and I felt very isolated as I was too unwell to see friends and family.

Googling Chronic Fatigue Syndrome and Long Covid also made me really anxious, as I learned it was often a lifelong condition. What would I do with my horses? When would I be able to enjoy life again? My three teenagers were as sick as me, which was terrifying and heart-breaking. What would happen with their schooling? How long will they be sick?

I really had to work on managing my worries and physical symptoms to reduce their effects. I let go of all household responsibility and accepted that others would have to help us. To reduce stress, I resigned from a couple of volunteer roles and made sure I avoided conflict – in real life and on TV. As a result, I only watched light programmes and read easy books.

I wrote in a journal to process my worries, and focused on gratitude and actively noticing little things each day that I enjoyed. Breathing exercises and mindfulness techniques helped my moe | sleep. Gradually, physical symptoms declined and worries became quieter.

What others say anxiety feels like

Anxiety manifests differently for people, but most agree on how disruptive it is. Meredith told me, “Anxiety feels like constant breathlessness and being on the verge of fight or flight.” Sam says her anxiety causes her to react “to every minor situation as though it were a major crisis”.

It can be very difficult to relax or concentrate when you’re feeling anxious. This can cause insomnia, as the body is too wired to allow moe | sleep. Anxiety also creates very uncomfortable feelings. Ben says he experiences a constant “sick, uneasy feeling in my stomach”. Isabel says, “My chest and diaphragm felt like they were cramping, and a billion ants were running through my veins wielding sabre swords.”

“It’s the uncertainty that sparks off my anxiety. How long am I going to be like this? What can I do to get better? Will I be able to keep my job? Will it get worse if I get Covid-19 again? There aren’t any answers.” – Anonymous

“The fear of the unknown, fear of having some kind of terminal illness, no answers and no definitive timeline.” – Anonymous

“While I have a history of mental illness, it had been very well managed for over seven years. Long Covid made my mental health spiral, which was very unexpected and terrifying.” – Anonymous

“I had severe anxiety recently due to my discretionary sick leave ending. This meant my already low income would halve. The anxiety made me catastrophise and convince myself that no one cares.” – Anonymous

What I have tried

Firstly, accepting my situation as it is now, and not dwelling on what I think my life should be, helps ease my worry. I try to be patient as my body heals, while keeping a sense of hope. A lot of research is happening, which gives me hope that there will be treatments for Long Covid in the future.

Also, a key technique is mindfulness: staying in the moment, rather than letting thoughts head to the ‘what if?’ Noticing the physical sensations you’re experiencing and the details of where you are and what you’re doing can help, as it stops your mind from worrying.

Other techniques I’ve found helpful include:

Talking to a trusted friend, family member or community leader such as a church pastor.
Scheduling some ‘worry’ time to really focus on your worries. Then if worries pop up at other times, tell yourself you will think about them during your ‘worry’ time.
Journaling to express yourself and put your worries on paper.
Seeing a counsellor, particularly if they can help you see ways to cope with your new situation.

Professor Judith Moskowitz, a health psychologist, says research shows it is really important to keep up positive emotions, ‘crowding out’ feelings of anxiety when dealing with life-altering events such as illness. She recommends eight tools for this:

Noticing positive events.
Consciously choosing gratitude.
Savouring the good stuff.
Reframing a situation to find its benefit (ie. the silver lining).
Being kind, to yourself and others.
Focusing on your personal strengths.
Setting and working towards attainable goals.
Practising self-compassion.

This podcast with Professor Moskowitz is a great listen too.

What others have tried

Calming the nervous system down involves getting your body to switch from the sympathetic nervous system (fight/flight) to the parasympathetic nervous system (rest/digest). These activities activate the parasympathetic nervous system, and reduce feelings of anxiety:

Breathing techniques: breath work is a simple yet effective way to calm the body. Find exercises on YouTube or go to a practitioner, as this NZ Long Covid patient did: “Breathing exercises by Breathing Works help calm my system.”

Vagal nerve stimulation exercises: research shows that Long Covid can damage the vagal nerve, which plays an important role in keeping our bodies calm. There are various exercises you can do to stimulate the vagal nerve, including humming.

Observation: sometimes when we feel the physical effects of anxiety, we tense up and worry about them. This can make the situation worse. Try to let the feelings flow through your body but don’t attribute meaning to them. For example, you can think things like “My neck is tight, I can feel a sharpness in my chest and my hands trembling,” while remaining detached. One patient says, “Grounding thoughts helped in the acute stages – concentrate on five things you can see, four things you hear, three things you feel.”

Distraction: doing something you enjoy, such as watching a movie or reading a book, can give you a break from noticing the sensations of anxiety. Make sure what you do is a calming activity, rather than one that will add to the tension. No horror movies!

Reduce stress: try to keep life as calm as possible. Consider changing seemingly small things (avoiding conflict on social media or watching scary films), and also reducing contact with people who cause stress in your life. One LC sufferer explains: “Reducing pressures (prioritising/delegating) and doing conscious mental health mahi | work (gratitude, identifying positives, journaling) help me to cope with it.”

Supplements: some people find supplements such as magnesium, B12 and NAC helpful, as they can tautoko | support the nervous system.

Being in nature: it is well established that time spent in nature can reduce anxiety. For best effects, go wandering without your phone and really connect to the environment.

Medication: sometimes people use all the right techniques but still struggle with anxiety. This is where medication can help – particularly for insomnia, which is often related to anxiety. For one patient, a combination of techniques has helped: “SSRIs [medication], lots of rest, reduced financial/work pressure and enjoying nature has helped me to grab hold of this monster.” Another says she has been given beta blockers “to slow my heart rate down and manage the adrenaline”.

Counselling. Seeing a counselor or therapist can help you process thoughts and feelings that can lead to anxiety. You can talk to your doctor about a few free sessions, which may be all you need, or will be a good start.

The best advice I received

Accept the sensations of anxiety as they flow through the body. Learn to breathe through them, rather than worry about them.

How others can help

It can help for us to kōrero | talk to close friends and family about the anxiety we’re experiencing. Loved ones can tautoko | support us by understanding that anxiety can make socialising more difficult, and we may need to take frequent breaks while hanging out to calm our nervous system.

Anxiety, from either a dysregulated nervous system or from fear and worry about the future, is a common symptom of Long Covid. It can be distressing and difficult to live with, but providing a supportive environment and listening to our needs will help. With time, it can significantly improve.

How anxiety progresses

For many people, the anxiety caused by a dysregulated autonomic nervous system comes on suddenly, and has a significant effect. As we adopt management techniques and the body heals from Long Covid, anxiety can become milder.

As with most aspects of Long Covid, the anxiety we feel can fluctuate. Sometimes it will flare up again, and it is hard to know why. Did I do too much? Did I watch something too intense? Was I feeling worried about something? If anxiety flares up after a good patch, it’s important to remember you got through it before and you will again.

Anxiety caused by worry can continue if you don’t use techniques to manage your thoughts and reduce worry. So, it’s worth making coping techniques a regular part of your routine.

Top 5 things to try

Breathing techniques.
Vagal-nerve exercises.
Spending time in nature.
Mindfulness practice.
Meditation.

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.

Support Group and Helplines

Sometimes it can be very difficult living with anxiety. 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