In our latest piece to raise awareness of invisible disabilities we discuss Long COVID and the impact this has on people. There are a range of symptoms for Long COVID that are similar to those with Myalgic Encephalomyelitis (ME) and chronic fatigue; this short film explains the similarities and offers support to people with Long COVID or Post-COVID Syndrome.
We spoke to Nikita, who is in her late 20s, and has been diagnosed with Long COVID. Nikita has recently resigned from a frontline role in public services due to the impact of her symptoms. Alongside this, Nikita also suffers with Hemiplegia, a condition that results in varying degrees of weakness, stiffness and lack of control to one side of the body.
I contracted COVID in July 2021. I got better, in the sense I wasn’t testing positive anymore, but the symptoms – the fatigue, the headaches, body aches, pains, confusion and brain-fog didn’t go away. I went to my General Practitioner (GP) who said I had to wait three months to see if I'm still experiencing difficulties before it can be diagnosed as Long COVID.
The symptoms I was feeling were indicative of the way anxiety manifests so the GPs - because they were not aware of the other conditions that result from Long COVID - were saying I probably had anxiety as a result of being unwell and they would prescribe me with medication to help this.
It was difficult waiting for a diagnosis. People at work were asking ‘well what’s wrong with you? Do you think you have Long COVID? Does the doctor think that?’ and I was trying to explain the three month wait. I could see my colleagues were getting impatient. They even put together their own action plan for me because I was fumbling things at work – messing up really simple tasks because I was in this anxious state but it was my body reacting to these new conditions. Their action plan was all about me getting on top of my anxiety and doing things to help me be more effective at work. I was saying to them ‘I don’t really know what’s happening’ …it made me feel even worse.
Between September and December I had a real low – physically it hit me more and then mentally. I wasn't understood by the doctors and the workforce and I had difficulty with what to tell my friends and family. I felt physically not well but I didn't know what it was. I then took a dive mentally even though I wasn’t actually anxious and depressed before, but I did start to feel that way for a period of time prior to seeing the specialist in December.
At work my colleagues were doing what they thought they had to do from a HR tick box perspective and not ‘this is someone that’s been really poorly and has now tried to come back to work but is still unwell’ approach. I thought if I got back into a normal routine my body would start kicking back in again, and I wanted to go back to work. When I first went back my health declined because of all the strain on my body. I called my doctor because I was having pains in my chest and we later discovered that I had a chest infection. This led me to me being signed off work for the second time.
Prior to seeing the specialist in December and being diagnosed with Long COVID, my manager told me to do things to keep my fitness levels up for work. I was asked to build myself back up again by going running. I tried it but I struggled, so I thought I’d try swimming instead as it's a good rehab exercise but it was obviously too soon to start doing anything that intense. I didn't know about bust and boom and chronic fatigue so I was just going for it and that’s when I got the second chest infection. Obviously I had pushed myself too hard and made myself really poorly again. At work they kept saying stuff like ‘well I’m no Dr but….’ and the classic ‘the more you do, the more you can do’, but that isn't the case with chronic fatigue.
It presents itself differently to everyone. The specialist was able to confirm my diagnosis for Post-Viral Chronic Fatigue and also informed me that I have Mass Cell Activation Syndrome (MCAS). This was presented to me physically in the form of prickly heat or a hive or nettle rash. I experienced this on my fore arms, hands and fingers to the point they were severely blistering because of the itchiness and become sore. I wasn't able to bend my fingers or pick anything up, and it's doing more internally that you can’t see. MCAS is when your body thinks you still have a virus so releases histamine to attack this virus but ends up attacking you. I still have it but I’m on medication now and I have to follow a low histamine diet which is hard work – I have to manage my meals for myself and that will take longer to prepare. If I was managing that while still being at work that would be really difficult.
I was also diagnosed with something called Postural Tachycardia Syndrome (POTS). This is to do with the heart and causes palpitations, intolerance to heat and excessive night sweats (which are absolutely horrendous). I’m unable to regulate my temperature so sometimes I’m freezing cold, then when I was going to meetings and moving around at work I’d be really hot. Any sudden movement or exercise, even if it’s just walking up a slight incline or over uneven ground, I’ll start to feel like I’m combusting from the inside out. Like I’m about to catch fire and I feel like I’m sweating from head to toe. Pre- COVID I could work out at the gym and not be perspiring but now I’m just dripping from everywhere, even my shins. Going to the gym is out of the question now, I can do a twenty minute walk with the dogs and that’s it. I can’t play netball anymore – I used to play once a week and horse ride.
Also, a major trigger of symptom flair ups is being rushed so if I don’t have enough time to complete a task or I’m running late and stuck in traffic or if something’s been put on me quickly I just start combusting. I’m physically combusting and at the same time my brain will be like cotton wool. I could forget something I’ve said or done in front of you about 10 seconds ago. My short-term memory is really bad. I can’t think and it makes decision making really hard. It’s like being hungover all day every day but you haven’t been drinking.
I have now resigned from my job because I’ve been putting my effort into daily appointments and oxygen therapy (which I would highly recommend) along with other things such as meeting with the Chronic Fatigue Service, the Long COVID consultant and the GP, and a plethora of other things like the physio and exercises.
I’m doing mindfulness and positive activities for my mental health as well as my physical health and on top of all of that I had my manager ringing me every week for an update even though I was signed off on long term sickness. It made me feel pressured to need to have something to tell her and to have made some sort of recovery that week because I knew they were looking for me to come back to work. I was trying to be healthy in mind and body to get better but I knew that phone call was coming and that added stress and pressure on me. For me it wasn’t healthy and they said they were calling to support me but it didn’t feel supportive, it was actually hindering my recovery.
You don’t know what someone’s going through just by looking at them, with invisible disabilities it’s not obvious. I’ve certainly felt it now – even when I’ve been at my most poorly I don’t necessarily look a mess because I’m a young, fit looking person. Sometimes I’ve told employers or other people what I’m experiencing or how I’m feeling and they just look at me like I’m talking rubbish. I sometimes just feel like I’m not going to be believed and that I’m being judged before I say something.
Cerebral palsy is a big umbrella and under that the condition I have is hemiplegia. When I tell that to people – because they automatically think of someone severely disabled in a wheelchair - they look at me like ‘no you don’t!’. I told a boyfriend and he didn’t believe me – he said ‘are you lying?’…I mean who would lie about that?! It took me months to tell him and when I did he didn’t believe me.
I found the chairs at work unsupportive so my manager had to get someone to assess me and pay for a new one that suited my needs. I felt uncomfortable when it arrived because people were saying ‘why does Nikita get a special chair?’ To look at me I’m just a normal girl and there were other people in the office that were older than me that had to put up with the normal chairs. I wasn’t asking for it because it was shiny and new but if I sat on their chairs for 12 hours it would be damaging to my wonky spine. I don't always feel comfortable sharing or explaining my personal situation.
I’ve used disabled seats on the train before and received looks, resulting in me moving or standing up. I was entitled to sit there and I needed to sit down before my legs gave way but I would get funny looks, especially when I was travelling to college or university. Due to my age I’d have people looking at me thinking I was just a cocky teenager that thinks they can take that seat off someone else. This would cause me to have a mental stress instead of a physical stress.
I think I have felt guilty my whole life – I’ve spent most of it masking it trying to manage everything as well as my peers do, so I just come across as normal and not a hindrance. I feel like at work I’m the problem child… ‘Nikita needs extra support with such and such’.
I had to wait to be seen by the specialist consultant for Long COVID but when I did that’s when everything started getting better. I’ve just done a Long COVID rehab programme where you get a 1-2-1 physio so I’ve been building up my tolerance and I can now do some swimming and Pilates. The things I’m doing now are definitely helping. It’s in moderation and I’ve learned how to regulate my good days, my bad days and my average days and understand what helps and doesn’t help…. so I’m busy every day trying to heal myself.
For further awareness of people living with an invisible disability, please read our previous articles on DAISY:
If you would like to contribute to this work on invisible disabilities in some way, or if you know of any young people or parents/carers that would like to be involved, please contact Robin Tay, CAMHS Participation Worker, on firstname.lastname@example.org