I Have A Hidden Disability, This Is What Getting The Vaccine Means To Me

While there are very few people who can attest that the pandemic has not changed their life at all, for young people with underlying health conditions, much of what we know to have been normal has shifted exponentially. 

But now, the vaccine offers a light at the end of the year-long tunnel, with Erin, 25 – who lives with epilepsy, one of the underlying conditions that qualify young people for a vaccine – verbalising what we all feel: "We all want the world to start turning and be able to return to a normal life."

Having lived with a formal diagnosis of epilepsy for eight years, and experiencing seizures since she was 11, Erin was very familiar with the risks that her health condition posed to her. However, COVID-19 put this into a whole new perspective. 

"Last September I fell ill, I was tested for COVID-19, but the result was negative. I had a viral condition and felt very run-down with a low immune system and I was put on antibiotics. Due to having an underlying health condition, I was concerned that I might have a breakthrough seizure; and that’s exactly what happened." 

"My seizures then became more frequent and I had one after another. I was particularly anxious about this and did as much as I could to avoid contracting COVID-19. My main concern was the symptom of a high temperature as if I overheat it can trigger a seizure. It’s important to remember that seizures can potentially be life-threatening when they occur. I couldn’t be as casual as others and I quickly realised if I caught COVID-19 it could be extremely detrimental."

The last year for Erin has been one of concern for her own livelihood and wellbeing, as well as the tumultuous experience of moving from her Belfast house-share to moving in with her partner. Their job meant she was alone for most of the day, meaning no one was around to check if she had had a seizure. 

Now, with Erin being in vaccine group 6 as defined by the Joint Committee on Vaccination and Immunisation (JCVI) – adults with underlying health conditions that put them at risk of a higher COVID-19-related mortality rate – she is starting to see a journey away from that anxiety. 

"I am extremely keen to get the COVID-19 vaccine. However, I did have a few concerns about how I might feel post-vaccine. The International League Against Epilepsy recommends taking fever-reducing painkillers for 48 hours after receiving the vaccine and I intend to do this to mitigate any risks of a high-fever side effect… The short-term risks [of vaccine side effects] are nothing compared to the long-term COVID-19 issues and I know I will feel safer once I’ve had [the vaccine], but between doses I will still take precautions." 

"My personal advice to anyone who is hesitant about getting the COVID-19 vaccine is to do your own research and use the support you have around you. There is no weakness in admitting to hesitancy or confusion." 

As Erin says, like with all vaccines, there is a risk of side effects, with the most common being a sore arm, tiredness, a headache, body aches, feeling nauseous and a slight temperature. However, the Medicines and Healthcare products Regulatory Agency (MHRA) – which has approved both the Pfizer/BioNTech and the Oxford/AstraZeneca – has approved the vaccine as perfectly safe to use. 

Not only is it safe but the data shows that it’s working to get us out of this pandemic. So far, we know that the Pfizer/BioNTech vaccine leads to an 83% reduction in deaths from COVID-19. Preliminary data also shows that a single dose of either vaccine is more than 80% effective at preventing hospitalisation, around three to four weeks after the jab.

Knowing just how important it is that you get your vaccine when you get the invite to do so, Erin says that "we must work with the facts".

"I know some people would rather avoid thinking about it but there are helplines and people in place to help. Weigh up your risks, please do counterbalance anything you see or read on social media with your own research if you are concerned – don’t be too quick to write the idea off – put that time in before you make a snap decision and encourage anyone, especially people with underlying conditions to do this."

Almost a year after changing her life to shield, Erin is now beginning to look forward to a post-COVID-19, post-vaccine life. "I guess, finally, I am looking forward to hugging my granny – but I absolutely cannot wait to take my nephew to the beach, I have been waiting since summer 2019! I won’t be waiting for sunshine this time, the freedom of being able to hop on the train and get there will be enough."

"I also miss volunteering at events to support my charity – Epilepsy Action – in public. This is particularly important to me as raising awareness of any invisible illness is all about getting out there and face-to-face interaction. Showing people that we look just the same and not all conditions are visible. I also enjoy the company of others who understand what it’s like first-hand."

"Like all of us, I really want to return to some kind of normality and I will never complain about the drudgery of the commute to work again."