Living With Long COVID

An interview with a VoiceBox Ambassador experiencing the effects of Long COVID
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Created by VoiceBox

Published on Jun 20, 2024
young woman lying on a couch
Zohre Nemati, Unsplash

Eden is a VoiceBox Ambassador from the UK. She is passionate about youth advocacy and spreading awareness about Long COVID. We spent some time chatting with her about the impact the illness has had on her everyday life and what others should know about it.

Hey Eden, Thanks for agreeing to talk to us today! Can you start by telling us a little bit about yourself? 

Hi, thank you so much for asking me to speak today. My name is Eden. I am 20 years old and I’m from Belfast, Northern Ireland. I am a VoiceBox ambassador and also a youth social activist. I’m really passionate about making a difference and helping young people's voices get heard in their communities. In my free time, I enjoy volunteering, reading, writing, and spending time with my dog Tilly!

How long have you been struggling with Long COVID? 

So I have been struggling with Long COVID since March 2022 after getting initially infected in February 2022, and it’s been quite an experience!

Can you explain your experience to those who don’t know what Long COVID is?

Absolutely so Long COVID is quite difficult to define as it is very unique to everybody and affects everybody differently with some overlap in symptoms. So long COVID is the after-effects of initial COVID infection and it's when your body doesn’t recover back to the way it was before and has persistent symptoms for up to 12 weeks after infection but can last for a number of years. The symptoms can be really different for each individual but some of the main ones would be chest pain, heart palpitations, brain fog, chronic fatigue, and joint and muscle pain.

How does Long COVID impact your day-to-day life?

Long COVID has had a significant impact on my life mostly negative, but it has also provided me with some positive opportunities which I will explain a bit more. I got infected during my A-level exams and didn’t have the time to properly recover as I had to push through and revise but this was a really challenging period of time for me as I was really unwell. I was falling asleep on the floor trying to revise I was in and out of A and E with chest pain and I was basically bed-bound for six weeks. 

I did manage to complete my A-levels and got the grades I needed to get into my social work degree in university however as a result of having to push through and try my best to get the grades my symptoms escalated further and I then made the decision that I wasn’t gonna be able to go to university that September 

Things didn’t massively improve for me, but I did find myself having more energy to get involved with different charities and organisations to volunteer and also I was able to work for a few hours a week working one-to-one with an adult with special needs. 

After that year, I decided that I was going to try university after completing a rehab program during the summer of 2023 and eventually getting seen by a number of medical professionals. Unfortunately, I was still really unwell. I had to get picked up by my parents during the day to rest in the car. I was having problems with my memory. I was really fatigued. I went to bed as soon as I got home every day and the next day couldn’t move. On top of all that, I then got reinfected two weeks into my social work undergraduate degree. This was really difficult to navigate with all symptoms returning a new ones forming such as rashes and I then had to make the decision to drop out of university. This was really hard for me and really really had a negative impact on my mental health but looking back now I realise that it was the right decision for me at the time and has allowed me to work on different aspects of my recovery and reevaluate what is important to me.

Long COVID has been a really challenging and isolating experience. I’ve missed out on a lot of opportunities with my friends learning how to drive being able to go to university being able to get a full-time job. I’m not able to do those things. I find it hard to concentrate following conversations and completing tasks is really difficult for me. I was really active and prior to getting sick had just got my black belt and taekwondo I was also hoping to get my assistant coaching qualification and be able to coach and judge alongside my own training, 3 to 4 times a week as well as participate in competitions in different countries. I was also really up for trying new things and enjoyed going ice skating and bowling and doing gymnastics in my garden. I now really struggle with exercise on some days I’m not able to get out of bed and walk around my house. I’ve lost a lot of my independence and have to have a lot of help and support from my parents. 

What are some of the misconceptions that you face about Long COVID?

There are definitely quite a lot of misconceptions, unfortunately around Long COVID but I think the main one is that it doesn’t affect young people. A lot of medical professionals and members of the public think that young people and their families are exaggerating and that the young people are experiencing depression or anxiety and that is why they are sick and not able to leave the house. However, I don’t think they understand that we don’t have a choice and many of us would love to university and socialise and have a typical normal young adult life, however, this isn’t possible due to our health. A lot of people don’t believe Long COVID even exists. This really frustrates me although there is a lot more awareness of the illness, people still don’t believe that it’s real

Tell us about the coping mechanisms you use to deal with Long COVID

So I think over time I have learnt how to cope with it better. Don’t get me wrong some days are really really hard. It can really affect your mental health having to deal with a debilitating illness, but I think the main thing that has helped me in the last two years has been volunteering and youth social activism.

I’ve gotten involved with a lot of different charities over the last two years as an ambassador and member of different youth panels. In the summer 2023 I became an #iWill ambassador and I even received youth and ambassador of the year from Youth Employment UK last year. I’m really passionate about young people having the opportunity to make a difference, have their voices heard, and not let the stereotypes disempower them. 

Another thing that has really helped me has been writing, in particular writing poetry. I was lucky enough to have my poetry published in a book recently and I’ve also had an article published in the Lancet Medical Journal. Both of these experiences I wouldn’t have had if I hadn’t been diagnosed with Long COVID, so I am grateful for that opportunity. I also really enjoy writing podcast scripts and I've had the chance to do this with the number of the different charities that I work with and I’ve really enjoyed it.  Writing really helps me to express my emotions and feelings especially when I’m having a difficult day.

Another coping mechanism that I’ve used has been the support of my friends and family, especially my mum and my dog Tilly.  They always cheer me up! I’ve made such good friends all across the country and I’m hoping I can meet them one day, as they are really special to me. 

Are there any support groups or resources for people with Long COVID? What’s your experience been like?

Yes, definitely there is more support out there than you think! I remember this time last year feeling really isolated and alone in my experiences as I didn’t know anybody with Long COVID especially not any young people and even began to question if my symptoms were real! 

I then started a rehabilitation program in my local leisure centre. Although this didn’t really help me with symptom management, it was a real eye-opener for me that there were other people in my local area who were experiencing similar symptoms to me, and I felt a sense of community that I had missed feeling for a long time.

Unfortunately, that program ended, but I then decided to look for other organisations that could support me, especially since after I had to leave university I felt really isolated and confused. I got in touch with Long COVID Kids, COVID Aid, and Long COVID Support which have been real lifelines for me. The people who are members of the charities are really supportive, empathetic, and encouraging. I do a lot of volunteering with all of them, and there are not any expectations or pressure as everybody gets it! Also working with them has given me the opportunity to make a lot of new friends, some even being young people. They have really helped me feel less alone in my experiences, and I know that I have made some really great lifelong friends as a result.

I recently have also found an online exercise program which has really started to help aid my recovery. It has a weekly subscription and there is a wonderful community of people with different classes you can join during the week depending on your energy levels, there’s meditations yoga some more advanced classes. There are also community sessions which are a great way to try something new without any pressure and I find it really helpful. I think the community is also really great as a lot of people who have recovered have stayed are able to share their stories and tips and advice which can really motivate and empower people.

If you could tell everyone one thing about Long COVID, what would you want it to be? 

The one thing I could tell people about Long COVID would be how really challenging it is. It has such an impact on your day-to-day life in ways that you wouldn’t imagine, and can be extremely isolating. It can have not only an impact on your physical health but also your mental health. I think you also spend a lot of time grieving what you have missed and things about your identity that you miss. I think it’s really difficult for people to understand how complex the condition is and why it fluctuates. It is not the same every day, and you have to take it one day at a time. I would just say to be patient with people that you know who have Long COVID and just try and be as empathetic and supportive as you can. They’re sick and they’re just trying their best so make sure that you provide reassurance and are supportive of their needs.

Thank you so much for listening to my story!

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