Living with long Covid: 'I was a healthy teenager – I hope that I will be able to lead a normal life again'

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Thousands of people, including adolescents and children, worldwide are suffering from the lingering effects of Covid-19 – from anxiety and struggling to breathe to coping with loss of smell or taste. Health24 spoke to Lydia, a teen in the US who overcame Covid but is now battling crushing fatigue, among other post-Covid symptoms.

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Lydia, 17

Contracted Covid-19 in February 2020.

I experienced night sweats and body aches for over three weeks and missed school for the duration of my illness. After three weeks, I, however, noticed that my symptoms began to subside.

I felt generally fatigued for a few months, but passed it off as exhaustion from the illness. In June, I had a symptom relapse which landed me in the Emergency Room with crushing chest heaviness and dizziness, as well as general malaise.

This was about the time where I began to realise that my symptoms were persisting longer than they should. I slept for 15 hours a day, taking naps in between every class to give me the strength to make it to the next one.

Since extreme fatigue has been my most persistent symptom, I was diagnosed with Chronic Fatigue Syndrome (CFS). I have experienced an onslaught of symptoms, some of which have subsided since last February, and a few of which have remained part of my everyday life.

I experienced muscle aches, burning eyes and face, hand tremors and partial numbness, hair loss, weight loss, extreme fatigue, brain fog, swollen joints, GI pain, food sensitivity, and many other symptoms.

Before infection, I was a very healthy, very active teenager. I took part in a multitude of extracurricular activities and got through my days without feeling exhausted. Now, I find that I have to be particularly careful about my level of exertion during the day, as I’ll need a few days of recovery if I push myself too hard or beyond what my body can handle.

This can be as simple as walking a little too far, or standing for prolonged periods of time. I have visited 12 medical specialists, among which a cardiologist, pulmonologist, immunologist, rheumatologist, neurologist, endocrinologist, haematologist, psychologist, pain specialist, physical therapist, primary care physician, and an ER physician.

The extreme fatigue has made it very difficult to proceed with a normal lifestyle, as I find myself constantly questioning whether or not what I’m about to do will have consequences. I worry that if I exert myself too much, I will spend the next few days in pain, “paying for it” so to speak.

The brain fog has made it difficult to continue with my academic pursuits, but because my schoolwork is so important to me, I have found a way to live with the symptoms and not allow them to interfere with my work. The physical pain has made daily life difficult as well, and has given me a heightened sense of awareness of my body and how I respond to pain.

I find I’m a lot more sensitive and worried about my body compared to before my illness, and I hope to gradually work to the point where I won’t have heightened stress about my physical state. I received both doses of the Pfizer vaccine [in the US] and have found significant symptom relief.

After nearly a month of aggravated symptoms and flareups, I found that my body pains and fatigue have become far less frequent and less severe. At the beginning of my long Covid journey, I worried a lot about how it would affect me in the future. I nearly lost hope and felt that my dream career and adult life were slipping from my fingers when I developed hand tremors in November.

I know that the medical community is working tirelessly to learn more about long Covid, but I don’t believe there will be answers soon enough to provide treatment or relief for me. I think that over time, my symptoms will subside, and I hope that I will be able to lead a normal life again.

The resource that has helped me most throughout this illness has been social connection with those who are confronting the same hardships. Because of the isolation I encountered in the early months of the illness, I set out to ensure that no other teen feels alone.

I created a website and handmade a symptom-tracking journal, and I send this journal for free to those who share their stories. The website is a library of stories, meant to assure not only those who share but everyone who reads the stories to realise that they are not alone.

With our monthly Zoom meetings, we have a sense of community and family among long haulers from every corner of the world – from France, Canada, England, Lebanon and the Netherlands to 16 of the US states.

The care and support among the members of Chronic Connections have been incredibly inspiring and uplifting, and I strongly believe that the biopsychosocial implications of compassionate connections are a major positive factor in assisting with healing and recovery from the inside out.

*Many people suffer from the long-term effects of Covid-19, even many months later. If you are one of those people, and wish to share your experience, let us know, and your story can be told in our Living with long Covid series. You are not alone. E-mail your stories to zakiyah.ebrahim@24.com

*For more Covid-19 research, science and news, click here. You can also sign up for our Daily Dose newsletter here.

READ | Long Covid: More than 200 symptoms identified, many with a negative effect on work life

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READ | Like a 'blanket of fatigue': Inside Groote Schuur’s long Covid clinic

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