Richard’s RARE Ramblings: Why?
In his regular column, Richard Barlow reflects on the difficulty—and the value—of stepping outside our own perspective to better understand the behaviour of a person living with a rare condition
By Richard Barlow
Recently I have been thinking about what it is I am about and why that is the case. What a good day looks like for me, what a bad day looks like. How I can make more good days happen and fewer bad days? This sounds quite flowery, but I think they’re important questions.
As with the fear I described in my previous piece, this introspection is not a phenomenon specific to XP, in fact it’s something we all experience at some point. Maybe I’m having a mid/third / quarter-life crisis!
For me, when I pin down to the absolute core of my behaviour, whether this be on a good day or a bad day, there is usually an element of XP worked into its logic or method. For example, driving to work in the dark relaxes me, even though my car windows have protective film on them and it’s 5am. Walking with a hunch, and staring at the ground to avoid light sources makes me feel safer—at the expense of my posture and about five inches of height. Similarly, on a flight, I often keep my face covered with a scarf or my visor, as I don’t want to see the brightness coming through the window panels, even if my UV meter has measured zero UV light rays.
On occasion, this all becomes too much. This may result in my cancelling things at the last minute because I don’t want to deal with all the stares, or several sweaty layers I need to wear, along with a multitude of creams and my visor, gloves and scarf. Last-minute cancellations are often misconstrued as ignorance, unreliability or flakiness. The fact is though, sometimes I just need a day off from it all, which you cannot always plan. Unfortunately, or fortunately, depending on how you look at it, unless you have such a condition or have grown up around someone with it, then of course you will not be able to relate.
Except for a handful of very close friends, it is largely my parents and two sisters who have any real idea about where I am coming from. Whilst things may be frustrating for them, I never need to give them an explanation about my behaviour, choices or plans, for which I am eternally grateful. Equally, I hope they would say the same about my reactions to them when they may make last-minute changes to pre-arranged plans.
The point is, unless you truly know where somewhere is coming from, then it is very difficult to fully understand who they are, what impacts their decision-making and what is important to them.
That’s not to say you can’t learn or develop an understanding, but it is very important to be wary of blindly applying your own set of values and logic to someone else’s thinking processes. Whilst not the main theme in The Unbearable Lightness of Being, this idea is quite elegantly explored by Milan Kundera, I think. It is a book I’ve read more than once, and one can take something new away each time. I highly recommend it.
Anyhow, in summary, I think what I am trying to convey is that sometimes the pressure of balancing my needs with the expectations of others does indeed get the better of me. On such occasions, I probably come across as illogical, confusing, or perhaps even rude. I shouldn’t be given a free pass in such circumstances when my behaviour invites people to question who I am and what makes me act the way I do. However, what I do think we can all apply is to be asking about why somebody is behaving the way they are, rather than focusing on actions through the polarised lenses of our own thinking. Certainly, this is something I endeavour to do with my friends, family and colleagues, even in everyday situations, which I think, has gone some way to forming deeper connections with them.
About xeroderma pigmentosum (XP)
Xeroderma pigmentosum (XP) is a genetic condition characterised by the inability to repair damage to DNA induced by ultraviolet radiation (UVR), light rays that cause sun tans, ageing and sun damage. People with XP are 10,000 times more likely to develop skin cancer, which can be life-threatening. Up to a third of people with XP have problems with the central nervous system as well. There are around 120 people with XP in the UK.
Richard Barlow is a person with xeroderma pigmentosum and the chairman for Action for XP, a charity which works to support people with XP in the UK and abroad. Incidentally, he is also a dermatology doctor training to be a consultant.
Please contact Richard if you have any thoughts on this piece or suggestions on what you would like to read about: Richard@action4xp.org
Whilst the tone of Richard’s pieces may often be light-hearted, 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 for them.