I’ve just staggered home from a 5-minute walk. I felt like I was going to collapse, with jelly legs, chest pain, dizziness, and shortness of breath. This is actually a relatively ‘good’ day – often I’m housebound with fatigue and a range of other symptoms. Lately, my face has been going numb and my mouth doesn’t seem to want to cooperate with what I want to say.

So I’m writing about it instead… for me, and for all the people around the world with long-covid.

Some things you might not be aware of:

  • Over 65 million people across the world have long-covid (royalsociety.org)
  • Numbers in Scotland are believed to be over 187,000 and rising (Scottish Parliament debate on 13th March 2024)
  • Very few regions in Scotland have dedicated support, with some clinics only being set up in the past few weeks. Expertise is sparse, with mixed reports about support from GPs. I am fortunate that mine has been supportive, although not fully equipped to refer me due to lack of a coordinated service until now.
  • 40% of people surveyed who are living with long-covid said the condition affects their ability to work at all (chss.org)
  • The covid virus has been found to leave traces in the body, for example in the brain, gut, heart, and blood. It can also cause micro-clotting and reduced flow in the blood vessels, causing worsening of post-viral symptoms (royalsociety.org)
  • In a recent study of cognitive and linguistic difficulties by Professor Louise Cummings, only 1 of 37 people in a sample group have returned to their previous role, and even then, that person has had to reduce their hours to part-time (via The Long Covid Podcast).

Today is exactly 4 years since I had covid for the first time. It’s also long-covid awareness day across the world. In this blog, I aim to raise awareness of what it can be like to live with the condition, and in the spirit of inclusion, suggest some ways to offer your support and understanding to people who are affected. I also want to make it clear that there has been a woeful lack of national support for the condition itself.

My early experiences

I didn’t have to go into hospital when I first had the virus, although I was very close. I had heavy, crackly lungs and a high fever, and couldn’t breathe very well at all. The NHS was simply too stretched and had to hold off new admissions unless absolutely necessary. I consider myself one of the lucky ones… well, maybe at the time.

I have been living with long-covid ever since, and although I’ve made a partial recovery three times, my most recent infection in February 2023 has had a devastating effect on my life. For the time being, I can’t work at all, my social life has pretty much disappeared, and I can hardly go out or do basic things at home. Sadly, this is not my first experience of chronic illness as my husband was diagnosed with MS (multiple sclerosis) in 1997 and hasn’t worked since. He regularly points out that there are some days when I am worse affected than he is, which took me a while to get my head around.

Symptoms can include extreme fatigue, high and low blood pressure, palpitations, brain fog (I mean total blank, not the kind people joke about), hormonal imbalances, nausea, dizziness, digestive issues, and visual and hearing impairments, to name a few (Note 1).  

As well as having many of the symptoms above, I’ve recently been diagnosed with: 

POTS (Postural orthostatic tachycardia syndrome), where the autonomic nervous system (ANS) dysfunctions and heart rate increases on standing or sitting upright to compensate (Note 2). This can lead to reduced blood flow to the brain and cause dizziness or fainting. Some patients have irregular heartbeats and other cardiac issues – I’m awaiting a cardiology appointment to investigate this.

MCAS (mast cell activation syndrome), where a type of immune cell is sensitive and easily activated, affecting a variety of systems in the body due to histamines and other substances being released. All of this can lead to inflammation. MCAS is thought to affect up to 70% of people with long-covid.

I’ve also had PEM (post exertional malaise) since the start, where I become ill and/or fatigued from even a small amount of physical or mental activity. The effects can last for several days or weeks. Even this short blog took nearly a month to pull together, a bit at a time.

How to better understand someone with long-covid (or any long-term condition)

These suggestions are based on my personal experiences and opinions, and from my perspective as a professional coach. Use your instincts based on how well you know the person.

Be curious about how it is for them, regardless of whether you ‘get it’. Imagine what it’s like in their shoes, without judgement or giving your opinion on what they ‘should’ be doing. Well-intentioned friends and family may suggest that getting out and about and involved in things will help. It can be very detrimental, and pacing is critical. In the majority of cases the person will have explored a range of solutions and are likely to be acting on several of them. 

In mindfulness we talk about having a ‘beginner’s mind’, which can be a useful frame if you don’t have personal experience of chronic illness.

And it may not be appropriate to talk about it, for example if you’re at a social gathering it may not be helpful to ask a lot of questions, but if you’re sitting having a coffee together to catch up, it might be more conducive.

Ask open questionswhich help to build understanding and place the focus on the other person, and how it is for them. Listen fully to what they’re saying, and the way they’re saying it.

Just be there. You could simply say “I’m here for you”, “if there’s anything I can do…” and offer to be a listening ear, if they ever feel like talking about it. And sometimes it might just be sitting watching a movie together or dropping off a meal to show you’re thinking of them.

Don’t just take my word for it

I also want to bring in the experiences of people I’ve met whose lives have been turned upside down after having covid. Here’s what they want you to know…

”I live day to day, not knowing if I can walk a distance, even between rooms in my house.

I cannot go out on my own often as my energy can drain so quickly that I could be caught out, unable to get back home. Therefore I am now fully dependent on my friends/family for help and support.”

“Something most people take for granted is being able to get out of bed and shower or wash daily. That is now a major task for my friend and requires a lot of pacing and planning.

Her bed is her best friend at present. Life is passing her by on a daily basis, she can see life outside her window but cannot be part of it. Cognitive function has been taken from her and what she could do she cannot even think about now.”

“I would like people to know… we live day to day not knowing what part of the body will be affected by LC. For example, heart palpitations, hearing problems, visual disturbances, living with chronic pain on a daily basis. Basically fear of the unknown.”

“The look of contempt and disbelief on health professionals faces, colleagues and so called friends.”

“I get fed up with friends asking me constantly “when are you going to get better?” Even though I’ve explained that some days I can walk well, other days I get tired with just going up my stairs. Many of my symptoms are unpredictable. I think that unpredictability is the hardest bit for non long covid people to understand.”

“That I’m still me but I don’t feel, function, respond or behave like me. Ask : how would you feel if that was you?”

“I normally explain it to people who don’t have a clue what long COVID is, I tell them, think of when you have flu symptoms but never getting rid of it”

“I think the worst thing for me after the pain and emotional stuff was feeling massive imposter syndrome if I felt a little bit better. Also all the pushbacks in 2020 about it not being a thing.” 

“So many people say to me ‘You look fine’ or ‘I’m glad you’re a bit better’ when I didn’t say anything of the sort. It’s very frustrating and demoralising.”

A glimmer of hope

Above all, I’d like to highlight how proactive, positive, and supportive the communities of people I’ve met with long-covid have been. We have depended on each other, in the absence of structured support, and I have found a range of information and solutions to help me navigate through this. Some are holistic and therapeutic, some practical or medical, and often focused on self-care and quality rest. Overall, the understanding of how it is for people in a similar position has spurred me on the most. Special mention for my local group in Falkirk, which is run by inspiring and generous people who are significantly affected themselves. And thank you to the members of Long Covid Scotland who represented us at the Scottish Parliament yesterday, despite a limited response from MPs.

Shared experiences have helped me to come to terms with where I am now, be in the present, and recognise just how much I AM doing (and have been doing) which is helping me. It has been a rollercoaster of emotions from anger and frustration to grief and joy, and I am still hanging in there. If you know me, you will be aware that I don’t give up easily!

I’ve also realised that it’s never ‘all good’ or ‘all bad’. Even on the days when I am floored with fatigue, and hardly able to string a sentence together, I can still laugh and smile here and there. And if it all feels like too much, I give myself time and space to be present with those feelings. 

My family and close friends have been very supportive and understanding, for which I am eternally grateful.

I hope and believe that I will recover one day. I continue to adapt and am focusing on accepting how life is for the time being.

My final message is about action. It’s time for our governments and a unified health service to acknowledge and address long-covid as the significant issue that it is, for individuals, families, and communities, not to mention the financial impact. This is not going to go away. And although it’s starting to gain a small amount of traction in the different parliaments in the UK, it MUST be focused on results and meaningful support, urgently. There are plenty of people with long-covid who are willing to raise their voices when they have the energy to do so, and I am one of them.

Notes:

1. Many of these things can affect people with ME/CFS and Fibromyalgia as well, although I don’t have the knowledge or experience to expand on this.

2. Information is from Dr Claire Taylor who is a leading authority on long-covid and a consultant for the World Health Network.

3. Other links:

https://www.bps.org.uk/research-digest/updates-long-covid-and-brain

https://royalsociety.org/blog/2024/02/is-there-hope-for-people-with-long-covid/