Looking ahead with Long Covid

In the last of our series of Opinions on Long Covid, Tracey Binnie reflects on her experiences, and looks at what needs to change.

I caught Covid in March 2020 and was diagnosed with Long Covid four months later when it was clear I wasn’t getting better. I was relatively fit and healthy before the infection, enjoying long walks with my dogs and getting back into hillwalking as well as being an active Girlguiding leader. Being a part of the first wave of people affected by Long Covid was scary and frustrating – I didn’t know what damage had been done to my body by the virus and didn’t know if or when I would get better. I often felt quite lonely too; despite having the full support of my family, it was hard to explain to people what was happening to me because I couldn’t understand why I wasn’t recovering either.

Two years later, I’m still living with Long Covid. My main symptoms are fatigue, brain fog, breathlessness, costochondritis (chest inflammation), exercise intolerance, GI issues, insomnia and muscle pain as well as being diagnosed with Postural Orthostatic Tachycardia Syndrome (PoTS) and Functional Neurological Disorder (FND). I’m mostly housebound and need a walking stick and wheelchair to get around when I’m out and about.

Throughout the summer of 2020 I was pretty much bedbound and spent most of my time reading everything Covid related in order to try and better understand my situation. I joined online support communities on Reddit and Facebook, filled with people like myself who were trying to figure out what Long Covid was and what it was doing to us. I found myself offering support and advice to people as the pandemic raged on, in an attempt to pass on my limited knowledge of Long Covid and help others.

I joined CHSS in May 2021 to head up the newly created peer support group for people living with Long Covid and to give those with lived experience a chance to share their story. Membership has grown significantly and we meet regularly on Zoom. The Long Covid peer support group is a safe space for Long Covid patients to share their experiences with others, offering emotional support. We often have guest speakers joining us, talking about subjects chosen by the group. In addition, group members also have the opportunity to help shape our Long Covid services as we continue to develop our care pathway. There are also plans in progress to offer face to face meetings, now that restrictions have been lifted.

The most common piece of feedback I get from group members is that they are grateful for the opportunity to talk with like minded people who ‘get’ Long Covid and understand what it’s like to live with a novel condition. Even at the two year mark it’s interesting (and worrying) to see that a significant section of the general public are still more focused on the mortality of Covid rather than the morbidities associated with it. Peer support group members have often mentioned being gaslighted or accused of hypochondria by friends, family and even healthcare professionals and I’ve heard some very distressing stories. However, group members are very supportive of each other and we quite often have a good laugh about our misadventures, usually involving brain fog. If ye dinnae laugh, ye greet!

It is disappointing, however that despite the information we now have on Long Covid people are still struggling to have their voices heard. I’ve lost count of the amount of people who have told me they were dismissed by their GP and other healthcare professionals, being told that they were suffering from anxiety and they should get out and exercise more. People in employment are also struggling with their employers, with many being forced to go back to work when they’re not ready or facing disciplinary action. Dealings with the DWP have also added to the pressure people are already facing, particularly with PIP applications, with people giving up on claiming benefits they are entitled to because the claims processes are far too exhausting for them.

Having said that, progress is being made. NHS boards in Scotland are putting their own care pathways in place for people living with Long Covid. Social Security Scotland will soon be responsible for disability payments and they promise a more empathetic and person centred approach.

It’s been a difficult two years for everyone, not just for people living with Long Covid, though the affect Long Covid has on people’s lives should not be underestimated or ignored. Long Covid is the biggest mass disabling event since World War I, with millions of people worldwide mourning their past lives, and the economic impact as well as health and social care considerations is plain to see. Many people are calling for the Scottish Government to follow England and Wales in setting up multi-disciplinary clinics so patients have access to a one stop shop of sorts, enabling them to see multiple specialists on the day and subsequently cutting down on travel to and from hospital appointments. Whether this happens in Scotland or not remains to be seen, but what we do need is clear care pathways, offering empathetic and equitable treatment options as well as social care options and financial support.

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