An estimated 2.3 million people in the UK are currently living with long COVID. The condition is most commonly reported by people aged 35-69, but it can affect people of any age. And many young people will also face the need to support friends or relatives.
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People with long COVID may face lingering symptoms after their initial infection, or develop new symptoms following some improvement. Symptoms vary from person to person, but long COVID can have profound effects on a person’s physical and cognitive function, their general ability to perform daily activities, and their quality of life.
Despite progress in long COVID research, there remain many unanswered questions about what triggers some people infected with the virus to develop long COVID, the course it might take, and what kinds of treatments may be effective.
This article is part of Quarter Life, a series about issues affecting those of us in our twenties and thirties. From the challenges of beginning a career and taking care of our mental health, to the excitement of starting a family, adopting a pet or just making friends as an adult. The articles in this series explore the questions and bring answers as we navigate this turbulent period of life.
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Just as those living with long COVID face uncertainty about the nature of their condition and how it may progress, it can be hard to know what to do if someone you care about, such as a friend, family member, or partner, is living with long COVID.
Here are four tips on how you can best support a friend or loved one in this situation.
1. Create a safe space
Some people with long COVID may face having their experiences discredited or dismissed as psychological. This can come from friends, family or even health professionals, which is sometimes called medical gaslighting.
For those living with long COVID, recognition and validation of what they’re going through by the people who matter most to them can be an important antidote to this experience.
Even people with long COVID who haven’t already faced dismissal may fear that others won’t believe they are ill, or that their symptoms will be trivialised. So the best thing you can do is to take your friend or loved one seriously when they say they’re not feeling well (even if they look well).
In doing so, you begin to create a safe space for them to share their experiences. They may need support to be kinder to themselves, and to accept the fact that their symptoms may be long-lasting or recurring.
You may also be able to support them to balance this with the knowledge that improvement in health, at least to some degree, is possible, and hopefully will be increasingly so with growing scientific knowledge.
2. Be flexible
Long COVID often zaps energy, with many people facing extreme fatigue and other debilitating symptoms. So living with this condition can involve making tough choices about where to focus limited energy, often prioritising needs (for example, work, chores, rest) over wants (like socialising).
For people with long COVID, energy can fluctuate from week to week, day to day, and hour to hour. Physical or mental exertion can also exacerbate symptoms. So you are likely to have your friend cancel on you, at least from time to time.
You may find this frustrating, and indeed, research has shown that people with chronic conditions can face shrinking social circles. But consider that your friend is likely to feel guilty and vulnerable because they can’t participate in social life like they could before.
Don’t take it personally if they can’t always show up to social gatherings or participate in family life. Instead, let them know you understand that they’re navigating a difficult condition.
3. Encourage (but don’t force) connections
Research has shown that belonging to social groups and maintaining connections with others benefits health and wellbeing.
If your friend or loved one’s symptoms make in-person activities difficult, you may find it easier to stay connected with them virtually. If you live in the same household with someone struggling with long COVID, you may want to plan socialising with others outside the household virtually.
Keep in mind their ability to connect virtually may be affected at times by another common long COVID symptom known as “brain fog”, which refers to cognitive symptoms such as difficulties with concentration and memory.
Research on another poorly understood medical condition, chronic fatigue syndrome or myalgic encephalomyelitis, suggests that online forums (such as patient-led forums, Facebook and YouTube), may help people living with the condition maintain a sense of normality, get social support, and make friends who understand what they’re going through. Where possible, help your friend or loved one to access and navigate useful forums that suit their needs.
4. Offer practical help
Managing a complex illness can feel like a full-time job. In addition to social support, a person with long COVID may appreciate practical help, for example with household chores, caring responsibilities, being accompanied to doctors’ appointments, negotiating adjustments at work, and more generally having an ally that can advocate on their behalf when they feel less able to.
Each person is different though, so check with your friend or loved one what will be most helpful for them.
Finally, don’t forget to look after yourself. Supporting a friend, partner or loved one through the ups and downs of chronic illness can take a significant toll on the carer. In particular, it can be very disappointing to see the person you care for relapse after a period of better health and activity. Ensure you have a support person you can call on when things are feeling difficult.
Damien Ridge receives funding from the NIHR for ‘Hearing from the unheard: impact of long-COVID in minority ethnic groups in the UK (Hi-COVE)’, NIHR, 2022-2023, as well as Roche for ‘Investigating how carers cope, access and use support services – Lessons from Covid-19’, 2021-2023. He has previously received funding from the NIHR for a project entitled, ‘Understanding the support needs of people with chronic fatigue syndrome/ myalgic encephalomyelitis (CFS/ME)’, in 2017.
Nisreen Alwan receives research funding from the NIHR for ‘STIMULATE ICP: Symptoms, Trajectory, Inequalities and Management: Understanding Long-COVID to Address and Transform Existing Integrated Care Pathways’ and ‘Hearing from the unheard: impact of long-COVID in minority ethnic groups in the UK (Hi-COVE)’ studies.
Ana Leite does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.