In his first RARE Ramblings column, Richard Barlow reflects on the fear that often goes with a diagnosis of a rare condition. He delves into his own experiences with xeroderma pigmentosum—and into his philosophy books—to suggest how we can reframe our fears

By Richard Barlow

A sun-filled nightmare

I write this after having been thrust into consciousness following a vivid nightmare in which I was forced to partake in surfing under the unrelenting Spanish sun in nothing but hideous shorts. Swimming among various fluids produced by the public may be nightmarish for most people, but it is exposing my skin to ultraviolet light which frightens me.

This is because of my xeroderma pigmentosum (XP), a genetic condition that means I cannot repair DNA damage to my skin induced by ultraviolet radiation. Consequently, I am 10,000 times more likely to develop skin cancer, which can be life-threatening.

Ultraviolet radiation (UVR) is essentially the (invisible) light rays, principally emitted from the sun and certain artificial lights, that cause ageing and sun damage. It is the same light found in nightclubs that makes white surfaces appear to glow blue.

For me, the condition is largely limited to my skin. For many others, up to a third in fact, the central nervous system is involved. A decade or so ago, I could’ve genuinely used the line ‘I am one in a million’, but now we know there are around 120 people with XP in the UK.

Making sense of fear

Since that vivid dream, I have been reflecting on fear—I suspect it was fear of losing control that prompted my nightmare. Fear probably makes sense in the context of XP—the condition demands meticulous planning of even the simplest of tasks to ensure personal safety.

When things are out of my control, I feel vulnerable and helpless, as I am sure is the case for many other patients with rare conditions. I am told that the idea of focusing on what we do have control over is one of the cornerstones of stoicism, a branch of philosophy that the Roman emperor Marcus Aurelius really got behind. Now, obviously we can’t all conquer Europe for our peace of mind, but I do think there is some value in focusing more on what we can control, rather than losing sleep on what we cannot control.

This may sound simplistic and more easily said rather than done, especially in such a complicated world, but I do think it offers a fresh perspective to those of us who have genetic conditions, or indeed any chronic condition.

A little about me

As well as being a person with XP, I am also a dermatology registrar (translation of registrar: a doctor one step below a consultant, who must therefore still make their own tea and coffee!). I am also chairman for Action for XP, a charity which works to support people with XP in the UK and abroad.

I am very thankful to Rebecca Stewart and Nicola Miller who invited me to write this column, which I hope will become a regular feature. This starter piece is a brief one owing to these introductions. I will endeavour to follow a theme for each segment, but I do apologise in advance if it becomes a scheduled whinge or unrelenting ramble, which I am told I am partial to. This is often the case from folk who use contemptuous statements such as “I don’t often complain but…” and then proceed to bore even themselves with their own whining!

Hopefully the tone of these pieces is at the right level but do bear in mind that XP is a serious condition and can be life-threatening. There is no cure, only supportive management, and each person is entitled to manage their own condition in the way they deem best.

Please contact me if you have any thoughts on this piece or suggestions on what you would like to read about: Richard@action4xp.org

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