I'm a 24-year-old suffering from long COVID. I get seizures, I can't drink or drive, and have had to move back in with my parents.

Left: Alex Bishop, 24, 15 months after contracting COVID-19, Right: Bishop while hospitalized in Spain with COVID-19.

Alex Bishop

• Alex Bishop got COVID-19 in 2020, which triggered an inflammatory response to an old brain injury.
• The 24-year-old spent over $13,000 on medical treatment and said he began having suicidal thoughts.
• This is Alex's story of battling long COVID for the past 15 months, as told to reporter Elle Hardy.

This as-told-to essay is based on a conversation with Alex Bishop, a 24-year-old from London who, before getting COVID-19, worked in media production and as an English teacher. The following has been edited for length and clarity. 

I got COVID-19 on December 14, 2020 — my third day of living in Madrid, where I had moved to start teaching English. Since then, it's affected every aspect of my life. 

I can pinpoint when I felt something wasn't right. Walking down the street in Madrid, I felt like I'd been hit in the head. I was immediately thrown off-balance and thought I would pass out. 

Over the next week, I developed a vestibular migraine, where you experience dizziness, then breathlessness, and a tiredness I'd never felt before. I also started having weird shocks and pains in my body while I was sleeping.

I was also hyperanxious; an alarm could go off 400 meters away and I would jump.

I ended up going to the hospital in Madrid for a day but was released. I tried to continue working as a teacher for three months, but symptoms of dizziness, fatigue, distorted smell, and pins and needles continued.

Eventually, I had to move back to England to live with my parents. I couldn't function properly and needed to stop working.

Accessing government help was a nightmare

I was referred to a National Health Service long-COVID clinic, part of the UK's public-healthcare system, but it was just a physiotherapist teaching people to do squats. With my urgent case, it was going to take five months to see a neurologist.

Bishop in Spain before he fell ill.

Alex Bishop

That's when my family and I decided to go private. All up, we've spent over £10,000 ($13,000). I'm so fortunate that they can support me — many others don't have that.

It took about six months to get signed off as unfit for work by a doctor. I was advised to seek Personal Independence Payment — disability benefits for chronic conditions — but when I went for the meeting, they said I wasn't eligible.

They didn't recognize long COVID as a disability. 

I finally found a neurologist who discovered that COVID-19 had triggered an old brain injury

In 2018, I fell through a garage roof. COVID-19 triggered an inflammatory response in my vestibular system, part of your inner ear that controls balance, and my brain, which provoked the old brain hemorrhage and led to me developing epilepsy.

I hadn't experienced any symptoms before contracting COVID-19.

They also found I was having numerous epileptic seizures each night. It explained why I was so exhausted.

Bishop had to undergo numerous neurological scans to get the correct diagnosis.

Alex Bishop

Getting on the right medication has helped me see some improvement overall, especially with my anxiety. But things still smell rotten, and I still suffer from fatigue, dizziness, and migraines.

Every aspect of my life has been affected, but my mental health has been hit the hardest

Working, reading, exercising  socializing or having a drink are too much. Even looking at screens makes a migraine worse. I was just existing.

It's not just about being tired — I lost my identity because it was so wrapped up in my job and my social life. It's extremely isolating.

Through social media, you're watching everyone else move further away as you fall further behind. And there's nothing you can do about it. 

After a few months of long COVID, I began feeling depressed. It got to the stage where I wake up to a seizure and I just wanted to die.

A few times, I woke up thinking I wanted to kill myself. I've heard of others with long COVID who have sadly taken their own lives.

Slowly, I learned some coping strategies

Doing something is better than doing nothing. Don't watch Netflix all day. When you're feeling like you want to hide, go outside. 

I've rarely attended social events, but when I have, I've found group environments when everyone is drinking difficult because I can't partake. Speaking with people one-on-one and sober is really helpful. If you reach out to one of your close friends, they will respond.

If I was using social media too much, I would delete it for 10 days.

Speaking with a counselor helped me change my mindset. I went from being really depressed about what happened to me to feeling proud of myself for how I've managed to get through it. 

After 14 months, I am now in a position where I feel well enough to look for part-time work

I'm looking for work in advertising and creative production. I've just started looking but will be going through LinkedIn and try to use my network.

It's quite a daunting prospect, and epilepsy makes things more complicated. A post-viral-fatigue specialist has taught me about pacing myself and that pushing too hard will make things worse.

I hope that I'll be able to go back to work full time.

I'm lucky to have family support. Trying to afford rent and bills on part-time work is extremely difficult. It's also really hard losing your independence and having to rely on others.

Long COVID has taught me how important your health is to your well-being. The most important lesson I've learned is to be really patient and disciplined with myself in terms of keeping to a healthy routine and keeping busy and not stagnating and sitting on my phone all day.

The more you think about your diagnosis, the worse you're going to feel. Now, I focus on what I can control.

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