Living with Long Covid: when your normal becomes everyone’s ‘new normal’

Rebecca Riley

Written exclusively for BHP by Rebecca Riley, Administrative Director of City-REDI, this piece reflects on the journey of someone who, already living with a complex and debilitating rare disease, is now experiencing Long Covid. As researchers’ understanding of SARS-CoV-2 continues to evolve, can we learn lessons from other prolonged disorders as we seek to understand Long Covid in the general population?

I have never really known what it feels like to be well. I can’t conceptualise it.

As a child I was plagued with illness, constant chest infections, coughs, and headaches. Eventually at around eight I was diagnosed with asthma. My earliest memories are of A&E, the look on my parent’s faces as doctors and nurses buzzed round me, trying to breathe colour into my blue lips. The sound of a nebuliser still takes me back to that moment. As an 8 year old suspecting I will die and trying to figure out what that means. Do you really live on clouds with god?

Weekly injections seemed to go on for years, (I assume some sort of desensitisation therapy, which no one properly explained) where needles would bend trying to get through the skin. Large chunks of school missed, and an array and assortment of inhalers, all shaped my childhood experience. I had a brilliant mum who saw me through this, who helped me do a school project on inhalers in my final year at primary. We wrote to GlaxoSmithKline to ask them for any information they had and a package arrived with posters and demonstrator models and I taught my class what asthma was, and the effect it had. That still didn’t stop teachers forcing me to do cross country though, and later on telling me asthma was ‘all in my head’ and I should learn to control it whilst preventing me from getting my inhaler.

I lived with the prospect of death every day. Avoiding allergens that put me in hospital, or the fear of losing, or constantly checking I have my inhaler (which I still do, inhaler, mask, phone, keys). Death is a heavy burden for an 8 year old. However I took the words of my gran to heart, never save for best, as best never comes. Live for today as tomorrow might not be there. On the face of it, not a positive approach but it’s levelling, realistic and I live in the moment. It has given me a drive, enthusiasm and a generally resilient outlook on life.

Alongside the asthma though, lurked another condition.

"I did a lot of pieces when I was diagnosed as it helped me process the impact. I always return to art when things are difficult" - Rebecca Riley. Artwork shared with permission - © Rebecca Riley

I had a random collection of symptoms that no one ever looked at holistically. That’s the problem with the GP system – intermittent appointments, with a wide collection of doctors, and each ailment treated independently.

Alongside asthma, too many teeth and bleeding receding gums (“you aren’t looking after your teeth”); dentist anaesthetic taking 6 or 7 goes before I can’t feel anything (“you must be imagining it”); incredible joint pain (“growing pains”) which I now recognise as subluxing/dislocating joints, but felt like knitting needles prising joints apart; exercise feeling like the muscles are being stripped off my bones (“too fat”, “too lazy”); very clumsy, falling over and bruising constantly without knowing how I did it (“were you drinking?”). Party tricks of being ‘double jointed’, all “normal for young people”. Knees crackling and popping (“early onset arthritis”). Slipped disk, tingling and burning sensations in limbs, (“you just want to avoid exercise”). Feeling hardly any pain in labour (“that’s odd, are you sure you can’t feel pain?”).

I grew up thinking all this was normal, because my mum and her mum could do everything I could, and had the same pain as me. Just normal. However, not being believed – or my pain being minimised or undermined – was normal. Literally everything being in my head, or because I was overweight, becomes very tedious.

At over 40, when I noticed my children had the same symptoms, I decided to do some research into hypermobility after a visit to the chiropractor with them. It was like a curtain was pulled away and all of a sudden all my symptoms made sense.

I visited my GP armed with a family tree describing symptoms. So began a long process of diagnosis and tests. This process was very different to my childhood, with the care exemplary in most cases, (apart from Professor “there is no cure so you just need to put up and shut up, so don’t bother your GP”).  I went armed as a professional researcher, who could talk to friends who were geneticists (“oh I’ve never spotted your ears don’t have proper lobes, should have known”). I was diagnosed with Joint Hypermobility Syndrome, now Elhers-Danlos Syndrome type 3. And I have passed it onto my children. 

About Ehlers-Danlos Syndromes

The Ehlers-Danlos syndromes (EDS) are a group of thirteen individual genetic conditions, all of which affect the body’s connective tissue. In EDS, a gene mutation causes a certain kind of connective tissue to be fragile and stretchy; individuals with the condition may also be able to extend their joints further than is usual – this is known as being hypermobile, bendy or double-jointed. These are complex syndromes affecting many systems of the body at once, despite this EDS is often an invisible disability. Symptoms commonly include, but are not limited to, long-term pain, chronic fatigue, dizziness, palpitations and digestive disorders. Such problems and their severity vary considerably from person to person, even in the same type of EDS and within the same family. 

Ehlers-Danlos Support UK

The mental strain this put me though was incredible – knowing you have given your child an illness that dooms them to pain forever is horrendous. Knowing the pain you feel is not normal and no one else has it and potentially you lost your mother at 53 because she was misdiagnosed (“arthritis”) and couldn’t cope with the pain, turns your world upside down. But tomorrow might not be there, my daughters are amazing and I can’t change the loss of my mother.

February 2020

As an economic researcher with experience in assessing the impacts of a pandemic, I watched the situation in China unfold and knew the potential effects. I also knew as an asthmatic I was high risk. My job since then has been assessing and analysing the effects globally and locally. But by April 2020 I felt ill, crushing headache, slight temperature, coughing (but couldn’t tell if it was more than normal), being sick and worst of all my balance went. I couldn’t keep upright in a chair or walk without falling and I was reminded of my Mum’s tinnitus where she couldn’t walk up stairs. But no breathing problems, I had doubled my steroid inhalers and made sure I took an antihistamine every day. I ‘recovered’ after about tqo weeks.

But it wasn’t really recovery. I felt like my ribs were being pulled away from my chest, constantly, both crushing yet being wrenched away at the same time. I went backwards and forwards to the Doctors (remotely) but my Covid symptoms didn’t match the recognised ones at the time and I struggled to get an appointment. I was sent for an x-ray (I have lost count of how many x-rays I have had as an asthmatic) nothing showed up. Eventually had blood tests which showed significant kidney damage, suspected cytokine storm. In October I had an antibody test – my results came back high enough to give plasma. As I read the latest research I realised my asthma medication probably saved me and as routine I had doubled it.

As my Long Covid symptoms emerged I recognised them only too well. Joint pain, chest pain – costochondritis and difficulty breathing, but now added are headaches, and palpitations if I push too hard, but by far the worst overwhelming fatigue. Pain I am used to, all-encompassing tiredness is a battle every day. Like walking through treacle, every movement and action takes energy beyond recognition. I see the comments on various Facebook groups for Long Covid as they mirror the everyday comments on the EDS groups. The similarity of pain and symptoms is astounding. The difference is EDS affects a small number of people, around 13,000 or 1 in 5000, latest Long Covid estimates are 970,000 or 1.5% of the population. I know from monitoring the volume of Covid cases, Long Covid could escalate what was the pain of a few, to the many.

"Eventually had blood tests which showed significant kidney damage, suspected cytokine storm..." Artwork shared with permission - © Rebecca Riley

As employers, policy makers and colleagues, we are underestimating the long term impact of Covid, and the damage it will do to our wellbeing and economy. It takes a certain type of resilience to face pain and illness, with no prospect of treatment, cure or improvement. I have been doing this all my life, it’s my normal, but the majority with Long Covid were healthy and active – this is all new.

I will have the underlying condition all my life. What I am not sure of, is whether the acceleration of symptoms I am going through with Long Covid will ever stop or recede. I have no choice but to maintain mental and physical resilience through it. Throughout my life (despite the sometimes clumsy or offensive responses) the NHS has been there to support me, and continues to do, even in the face of the unknown, and I will be forever grateful.

About Long Covid

Most infections with Covid resolve within the first 4 weeks. “Long Covid” is an informal term that is commonly used to describe signs and symptoms that continue or develop after an acute infection of COVID. Depending on how long you have ongoing symptoms for, it can be called one of 2 things: Ongoing symptomatic Covid is where your symptoms continue for more than 4 weeks. If your symptoms last for longer than 12 weeks, it will then be called Post-Covid Syndrome.

Symptoms of Long Covid can be many and varied and can change over time.

– Yourcovidrecovery.nhs.uk