How I live with Long Covid

I’m Eden; I’m 20, from Northern Ireland and I am currently doing a lot of social activism work before starting my social work degree in September 2024. I do a lot of work with The Mix in a variety of different roles.

It’s hard to believe that the pandemic started almost four years ago. What feels like a blur of iced coffee, Zoom quizzes and TikTok dances is still a prominent memory that we will be telling our grandchildren about in the future. Everyone was affected differently by the pandemic, whether you had your exams cancelled or had to move online for work. While a lot of freedoms were taken away, some people made the most of a difficult situation by volunteering or spending more time with family and friends.

The pandemic is continuing to have its impact on young people – the disruption of education, the cost of living crisis, the negative impact on young people’s mental health and the formation of new health conditions which are not often talked about, such as Long Covid.

Long Covid symptoms

Around two million people in the UK are living with Long Covid, with around 90,000 approximately being children and young people. It’s quite a complicated condition to explain but in short, it’s people who have been infected with Covid or have had side effects from the Covid vaccine that haven’t recovered after a long period of time.

There are a whole range of different Long Covid symptoms, and each person experiences it differently. Some of the most common Long Covid symptoms include:

• Chronic fatigue
• Muscle pain
• Cognitive difficulties
• Breathlessness
• Heart palpitations
• Muscle weakness
• Abnormal smell or loss of smell

It’s a highly fluctuating condition, with symptoms coming and going over time and ranging in severity. The condition can affect every aspect of someone’s life, causing physical, mental, emotional and social challenges, and can be really difficult to manage.

The day-to-day challenges of having Long Covid

Prior to getting Covid, I was an extremely active young person who was really outgoing and sociable. I was about to start my university degree, enjoyed meeting up with my friends and trained in Taekwondo four times a week. I competed in and coached Taekwondo, and did seminars that lasted six hours long.

Currently chronic fatigue, muscle and joint pain are some of the main problems for me. I spend a lot of time doing things from my bed and am asleep very early most nights. My whole routine is very different from what I was used to before.

I now can’t walk for more than two metres without getting significantly out of breath and have a racing heart. I get really light-headed after doing any type of exercise, such as going up the stairs or standing for a long period of time.

I’ve had to drop out of university and a lot of my freedoms and independence have been taken away from me. Life has changed significantly and I now have to go at a much slower pace.

How can Long Covid impact your mental health?

Long Covid has quite a negative impact on your mental health. There’s the fear of the unknown in the future, and there’s a lot of stigma and stereotypes around Long Covid, especially for young people.

There’s a lot of gaslighting from medical professions as they don’t always believe that your symptoms are real. There’s also pressure from friends and family to act like yourself and just get on with things. This can really have a negative impact on your mental health and wellbeing.

It can also escalate your physical symptoms more, as you might not want to reach out for support from medical professionals due to the fear and stigma of not being believed or taken seriously. You can feel very isolated and you can really miss and grieve doing what you used to enjoy.

Sometimes it might feel that everyone is ‘getting on with their lives’ and moving on without you. You can feel extremely left out and struggle with self-identity.

What helped you to cope with these challenges?

What has really helped me cope with challenges has been learning when to say no to prioritise my own health and wellbeing. It’s not always easy, but it’s something that you have to learn to prevent further negative impact.

Support from friends and family is also really important and has helped me a lot. I’ve made a lot of new friends through volunteering online all across the UK and although I have never met them in person, it feels like I know them very well. Connecting with other young people and people who have Long Covid is also really important as you can feel that they understand you and can support you through the tough days.

I’ve also started journalling and writing poetry and am getting some of this published. It’s a real creative outlet for me and allows me to express my emotions and what I’m going through without having to verbally, as this can be difficult.

For someone who really used to enjoy exercise and trained in Taekwondo four times a week, this is something I miss a lot and struggle with, however, making sure that I’m doing some stretching every day helps me feel I am keeping active, doing something that will benefit me in the long term and hopefully aid Long Covid recovery.

Tips for those impacted by Long Covid

As Long Covid is a relatively new condition, there is still a lot of research and testing being done to see what helps people, and there is no straight linear recovery process. Long Covid can be extremely isolating and physically and mentally demanding, so taking each day, each week and even each hour at your own pace is important.

Pacing is extremely important, although it is not always easy. You have to plan out each activity every day, no matter how small it is. For example, washing your hair can be really exhausting, so planning rest time afterwards, even for two to three hours might be needed.

It’s important to prioritise what you need to get done each day and setting boundaries for yourself is necessary to prevent more detriment to your health. I have found this quite challenging and Long Covid has really taught me how to say no and prioritise my own health and wellbeing.

Also, allow yourself to feel rubbish. It’s ok to stop, it’s ok to cancel a meeting or a few, to just say no. With Long Covid recovery, there will be good and bad days, but allowing yourself the opportunity to prioritise yourself and practice self-care is so important.

Useful resources for Long Covid

You might find these resources for living with Long Covid helpful:

•  https://www.longcovid.org
• https://www.longcovidkids.org
• https://www.thelancet.com/journals/lanchi/article/PIIS2352-4642(23)00348-6/fulltext#%20
• https://covidaidcharity.org