RARE Revolution’s David Rose, is our business development associate and an ultra-rare disease speaker. David reflects on life during lockdown, navigating work, managing his health and throwing his relationship in at the deep end. 

The world has been a very different place over the last few months – I’m sure we can all agree on that. The COVID-19 pandemic has dominated the news since January and every aspect of our lives.

I moved in with my girlfriend a week before lockdown started here in the UK – we were very lucky in the timing. Due to the restrictions that were put in place – many of those in relationships who were not already living together found themselves having to be apart.

The frenetic pace of life has slowed for many of us

COVID-19 has made many of us rethink life in general and how we go about it. Before the pandemic much of the UK were living a very fast-paced lifestyle. Many of us had long working commutes and busy schedules, suddenly the majority of the population were forced to stay at home, no longer commuting and were very restricted in our activities. Perhaps, many in the UK, either by choice or no choice will have to rethink this lifestyle and go about life at a slower pace than before?
I work from home, so the big shift for people working in office spaces, now having to work from home, has not affected me. However, the same cannot be said about my health.

Managing my health during COVID-19

“I think being ill my whole life has given me an odd advantage over healthy people during this outbreak.“

Healthcare has and will continue to be affected in many ways throughout this pandemic.

For me personally, I’ve been more concerned about my own rare disease and the other conditions I have rather than COVID-19 itself. I’ve had plenty of near-death experiences growing up. I think that has made me look at my life a bit differently and made me very relaxed about things – not sure if that’s good or bad!

I think being ill my whole life has given me an odd advantage over healthy people during this outbreak. I have had dozens of operations and procedures and so have become used to long periods of recuperation and having to rest, spending a lot of time at home and being very idle.

However, my health issues have continued throughout this period and it has been an especially tough time to be ill, as many of the services I would normally access and take for granted have been unavailable or heavily restricted. My local GP shut a few weeks back, thankfully, they were available to help via the telephone to ensure I could still get my medications etc.

Since February and especially during March my health has been very up and down. Before the pandemic, this would have involved at least two trips to A&E when I was feeling particularly ill, but because of COVID-19 and the pressure on the NHS I felt I really had to stay out of hospital.

Many of those in the UK living with a rare/chronic condition received a letter from the government or their hospital. I received my letter saying that I’m in the ‘high risk’ category, but not required to shield. In all honesty, I wasn’t sure whether I should still shield or not – but I chose not to.

At the time of writing this, I’m a few days away from attending my first hospital appointment in person for several months. As I said, my rare disease has been causing a lot of issues, especially during the past few weeks – so I’m looking forward to attending hospital – quite a weird expression, I know! It’ll be a weird sensation to leave my local area for the first time in months and to use public transport again.

Now that hospitals are starting to open a bit more, I imagine that the waiting lists for non-urgent appointments and operations will be through the roof. I think it will take quite some time for hospitals to recover from this backlog.

Telemedicine could well be the new normal in healthcare. Most of my clinic appointments have either been postponed or turned into calls, or even video calls. I think this will be the new normal for healthcare. Although you may not get the same benefits of seeing your healthcare professional in person, telemedicine has many advantages. Most notably, the cost of time and money.

The NHS staff have done an incredible job during this pandemic. I am so thankful to them all the time, as they always do a great job in looking after me on a day-to-day basis. But, having seen their dedication and the powerful images and videos online throughout the pandemic – it has really hit home how incredible they are.

Personally, COVID-19 has made me connect with my friends and family in a different way. Although we can now meet up albeit in a socially distanced way, for the first few weeks we turned to chatting via facetime and I have taken part in more quizzes than I could ever have imagined! And we still continue to stay in touch like this.

I can’t believe how fast the time has gone over the last few weeks – I really thought time would drag on.

“It’ll be interesting to see how the next four months go – how do you think things will change in this next chapter?” 

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