How to Help Someone with Long Covid
The SPLASH Guide
Long Covid’s reach extends beyond patients to encompass their friends and family. It can be a challenging illness to understand, as there isn’t a clear public perception of the pathology and encouragement to move past the pandemic is common. The downplaying of the risks and seriousness of Long Covid hasn’t helped much either.
Yet, with empathy, compassion, and knowledge, it is possible to enhance the quality of life of a person with Long Covid. Shifting perceptions, reworking boundaries, and a flash of courage may be necessary, but a few modest acts readily amplify the effort.
So how do we do this? We created a SPLASH guide, (which is also relevant for ME and other chronic illnesses) which contains a few handy pointers that can make a difference. Let’s explore!
Stay in Touch
Sounds simple, right? Yet, it is a very common experience for people with Long Covid and chronic illness in general that there is a progressive diminishment of social contact. There can be understandable, though often unacknowledged reasons for this. But with some honest reflection and social and emotional understanding, we can overcome these.
Often, people just don’t know what to say. It can be hard to see the person beyond the illness. The rules of the game have changed, hell, the whole board game has morphed! Long Covid is unusual, especially if ME is also a factor, in that it can be difficult for people with the condition to socialise.
There are several reasons for this. One is orthostatic intolerance, a complication common in Long Covid. OI can be devastating socially as enough blood doesn’t get to the brain and being upright becomes climbing Mount Everest! An apt metaphor, seeing that both significantly reduce cerebral oxygen.
PESE (post exertional symptom exacerbation) is another gremlin, so any exertion, and yes, that includes being alive and sensory processing leads to a worsening of symptoms. It may lead to days of hell, lying in a dark room for what can feel like an eternity if one overdoes things.
Long-term illness is pretty challenging to our worldview, to what we think our lives should be. It’s a perfectly natural reaction that suffering and the unknown are scary. Yet, what we need to watch is if aversion arises, and it becomes simpler to avoid that person.
One might also fear being asked to take on too much responsibility that is beyond their capability. Yet, with some clear boundary setting and discussion, this shouldn’t be a problem.
Yikes, this is all quite heavy. But there is some good news. What can make a tremendous difference to a person with Long Covid is often significantly smaller than what is thought.
A simple text, even if it’s a few times a year, can mean the world. It shows they haven’t been forgotten and that they are still important.
So, let’s get into some tips on communication. It is a good idea to ask for the best way to contact them. Visiting and phone calls (especially spontaneous ones) might be too much. What’s app or even voice notes might be more accessible. There’s nothing wrong with a good old-fashioned letter or postcard either. (Hint, especially on birthdays!)
Liking and engaging with their social media is another top tip, as it is a common experience in the community for their Facebook to become filled with tumbleweeds. It’s an action that can take a second but has a lasting impact.
Don’t worry either if there is a delay in response. Don’t be discouraged, we are not playing by the usual rules of the game and Long Covid is a serious life-limiting condition.
Long Covid seriously challenges the norms of social engagement, which are based on reciprocity. Yet, someone with this condition cannot fulfil the usual social relationships as before. Often, a re-juggle is needed. But friendship and looking out for those in need is one of the most defining and best qualities of humanity.
Be that star in the daytime who reaches out.
Be Practical
Phew, we’ve tackled the biggest issue, staying in touch. If this is under your belt, well done, many fall at this hurdle.
We’ve discussed PESE, and this means that everyday tasks for someone with Long Covid can be incredibly difficult. Because the illness is not usually associated with mortality, its seriousness is commonly downplayed. Yet, the quality of life is lower than other ‘more noble’ illnesses, like cancer or kidney disease. This is because of the difficulty of interacting and engaging in the basics of daily living.
Let’s talk about how to go about this. Generalised offers of help aren’t always easy to engage with. So, instead of saying, “if I can do anything let me know”, communicate that you’d like to assist practically. Asking them if there is a particular job to be done can be a better way. Being specific helps and small acts, even if not regular, are more than adequate.
Alexis (@alexis_me) gave the astute feedback that, “regular smaller help is much more helpful than one off big gestures.”
For example, something like, “I can pick the kids up on Tuesday,” or, “I can put the bins out on Monday,” will quickly earn you superhero status.
Another possibility is to pool help and start a whats app group (or equivalent) of people who are happy to contribute, so this is more manageable and sustainable.
We have a neighbour who, when making cinnamon buns, just leaves some for us on the doorstep and TBH I think I will remember this to my dying day, as it is one of the few acts of kindness that we have experienced from the surrounding community.
Learn
If you’ve got this far, you’ve already made a tremendous difference to someone’s life. Yet, informed support is even more powerful. It is frequently left to the person with Long Covid to try to educate those around them. This can be no easy task due to the energy-depleting nature and often life-changing cognitive dysfunction of the illness. So, if a person takes the initiative to learn the fundamentals about Long Covid, this is a deeply meaningful act that not only shows that person you care but enables them to be safe and secure with you.
Yet, due to medical reluctance to deal with Long Covid and surrounding controversies, one does need to be careful and rely on community trusted resources. This isn’t always as easy as it sounds as even resources provided by orgs and charities can be misinformed and fall short (ahem post covid clinical society). But you’re in luck. Here’s a quick linked list for you:
Trusted Learning Resources
Bateman Horne Centre - a reliable, well-informed resource by expert health care professionals
MEpedia - a powerhouse wiki built by volunteers
Long Covid Advocacy – a quick glance guide with ready-to-go links
Long Covid Physio - clear and concise information by physios with lived experience
If you want to know the key topics to be aware of, they are:
PESE/PEM (post-exertional symptom exacerbation or post-exertional malaise)
OI/POTS (orthostatic intolerance/postural orthostatic tachycardia syndrome)
ME (myalgic encephalomyelitis)
Not everyone has these complications with Long Covid, but they are highly prevalent.
Advocate
People might not be aware that dealing with the medical profession with a chronic illness is not a fun picnic. It is a far too common experience to be unheard, unsupported, and dismissed.
Fortunately, there are straightforward ways to provide support. One is just by being there. Having someone else in the room can improve the quality of care. You act as a witness, can take notes, and ask any pre-decided questions.
If someone wants to go a step further, they can help prepare for the appointment and basically act as a human force-field shield in protecting a person who finds getting out of the house an arduous feat.
Making sure they have and preparing supportive aides such as salty snacks, electrolyte hydration, and sensory items, such as sunglasses and earplugs, helps that person pace and retain as much energy as possible to get through the appointment. Ensuring there is a quiet, comfortable place to rest and lie down after is also a winner.
It isn’t just medical appointments that someone might need an advocate. Far from being an itinerant bastion of scroungers and ne’er-do-wells, people who are disabled have to deal with an actively hostile and punitive benefits system. This wasn’t designed for those with energy-limited conditions either and can be a nightmare to deal with.
Helping with this process, or finding someone who can, is a god-send.
Sensory Awareness
Hopefully, people are polishing their halos by now, as we are becoming an informed, sensitive and supportive ally. Remember, this is a learned ability. We don’t come with an inbuilt guide book and mistakes will probably be made. But that’s okay if we possess the capacity to develop and adapt.
We’ve touched on sensory awareness before. The way the covid virus interacts and damages the brain can lead to difficulty in sensory processing. Noise, movement, smells, and light have the potential to be overwhelming and painful.
This can be misunderstood and diminished as it is often perceived as a subjective, feeling experience where actually it is pathology. It is also something medicine is slow to recognise. I mean, it took researchers over 40 years to even acknowledge that sensory overwhelm was an issue in autistic people.
Yet, just understanding that the environment needs to be controlled can stop an exacerbation of symptoms or even seizures in some cases.
Keeping the lights low, controllable noise and movement to that person’s comfortable level (and it does vary) without them having to manage, that is quality allyship.
A pre-decided time limit is also mutually beneficial for contact. Then the person with Long Covid can interact within their safe limits and does not have to navigate unnecessary social hurdles.
A lot of social pressure can come with Long Covid, as people, understandably, want to experience a nice time together. Yet, occasionally, we must examine motives and our own insecurities if this is the only interaction we desire. There aren’t many illnesses that stop people from even basic social engagement for a long time. Which is often why people disappear when they are actually needed the most.
Yet, with our evolving knowledge and understanding, even if this does challenge us, friendship can still be a rewarding and enhanced connection.
Humour
Lastly, is humour. People with Long Covid and those around them don’t lose their sense and need for fun. This might have to be adapted, as it’s unlikely we are able to go to a theme park. But it is important that we see beyond the illness too. Humour humanises people. Your interaction with someone with Long Covid doesn’t have to be solely about the illness. Even if it’s just sending a funny cat meme, it shows someone you are thinking of them.
Susan Sontag discusses the concept of the kingdom of the sick and the kingdom of the well. Highlighting the divide that can arise when someone is unwell. Yet, humour is one way to bridge this gap (which can be pretty scary). It’s something that can exist in both, as well as kindness and understanding. Everyone usually has some visit to this kingdom at some point in life, so having the capacity and empathy to help benefits us all in the end.
Yet, if a friend is waiting until recovery or improvement occurs to interact at any level, then maybe it is best that that person isn’t in someone’s life. Fairweather friends are one to avoid. It’s worth looking out for foul weather friends or schadenfriends too, who seem to turn up when you’re a last resort or love drama or misfortune in someone’s life.
This isn’t an exhaustive list, but it is a place to start. Long Covid varies in its severity, so people’s needs vary and folk around sufferers have different responsibilities. One doesn’t have to tick every box, yet even one step, one action, is a golden ticket to a special someone in life.
When individual acts of support and kindness are normal in a society, then it is a better world for everyone. Jesus might have been onto something when he said treat thy neighbour as oneself. The golden rule is a common thread in many cultures (religious and non) and for good reason.
We hope this guide enables everyone to be able to make a positive SPLASH for someone with Long Covid. Other suggestions we had that can also make a difference were:
To mask and take precautions to not pass on illness (as many people with Long Covid worsen on Covid reinfection)
Fundraise for research
Check-in with carers
If you have any handy tips or ideas on how to help someone with Long Covid, then do let us know in the comments.
Appendix
PDF (is on our website, bottom of the article)
*Please note this is a general first-step guide and not intended for the full-time care that someone with severe Long Covid, which is often ME, needs. That deserves dedicated and specific resources, help can be found at:
Caring for the Patient with Severe or Very Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
My only addition would be to wear a mask around them. The last thing they need is another infection that could lower their baseline.
Excellent, thank you! I will be sharing this widely.