Welcome back to our series "Letters to my younger self".
If you could, what would you tell a younger you? What advice would you give? What tips could a younger you use to deal with the struggles you know are coming?
In this series, RARE Youth Revolution is reaching out to some of the slightly older members of our community who know what it is like to grow up with a rare disease.
By writing letters to their younger selves, we hope that they can offer some advice and guidance that benefits all young people with rare diseases.
I have xeroderma pigmentosum; a condition whereby ultraviolet (UV) damage to the skin is not repaired at a cellular level which vastly increases the risk of skin cancer. As a result, I have to protect myself from sunlight by covering up head to toe, wearing sun cream and avoiding UV which primarily comes from the sun.
It is a genetic disorder and I was lucky to be diagnosed at age of 8 which is younger than a lot of people I have met. Like anyone, XP or not, we have lots of challenges as we go through life and I am no different in that respect. Currently I live in the midlands and am working as a dermatology doctor on my way to becoming a consultant.
This is Richard's LETTER TO MY YOUNGER SELF!
Dear Rich,
I know there’s a lot happening in your head at the moment. Most of it will stay there for the rest of your life so it’s worth addressing it sooner rather than later.
First off, let’s address the two main worries you have nagging away most days. One is that you mistakenly believe that XP will mean you never form physical relationships.
I guarantee you it will not be a barrier to having a physical relationship, and like many other people you’ll squander plenty of opportunities for a multitude of other reasons - you would do well to remember that a shower and a haircut goes a long way.
Anyhow, regardless of your appearance, there are people who can see past the surface, I resolutely assure you.
The other is that you worry about dying before experiencing a good portion of adulthood and all its associated perks. You should heed what Dad said when he asked if knowing your day of death (whether it be tomorrow or in 60 years), would have any bearing on how you would live the rest of your life, however long or short, and then to act on those changes there and then. In essence, take charge of what you have at this time and live in that moment as a result. It may sound a bit flowery and doesn’t necessarily mean dropping everything and trekking through the Andes, it means engaging in the here and now in whatever form that is and with whoever that is.
Now that we have conclusively put those two to bed I can tell you some other things that you perhaps haven’t considered at current. Mum and Dad will always have time for you, and they want to know when things are going well and when they aren’t and everything in between. You should put aside some time to speak to them more regularly and continue to do that longer-term; there is nothing wrong with admitting to a difficult time and having a good wholesome cry. In addition, don’t let XP be any kind of obstacle to getting what you want.
You should take opportunities with both hands as and when they present themselves, both personally and professionally. You are not in any way less deserving than someone with whom adjustments for UV do not need to be made.
I think as well you should acknowledge all the excellent people you have been lucky enough to call your friends right from primary school through to university and beyond through work. Even as a young boy you have had the pleasure of a wonderful group of friends and some people are not fortunate enough to have that. In the same vein, your family have been a tremendous rock on which you are currently building up from. It may not be apparent at the moment but your sisters in particular have had to adjust their entire way of living growing up with you. This is not to make you feel guilty, quite the contrary, it is a reminder of the strong women they are. Similarly, your parents are just as affected by this condition as you are albeit somewhat differently and its important to bear this in mind. Continue to cherish your friends and family.
Lastly, you will most likely blame XP for years to come for various challenging times and 9 times out of 10 its probably not the root cause. Most people have very similar challenges at the core of it and therefore can relate. In the future, instead of troubleshooting what you think the problem is (XP) look at what you want to create and take the actions that will lead to that outcome.
In summary, I want to round things up by saying that you’re doing really well in the grand scheme of things and you would benefit from cutting yourself some slack more often. Continue to hold your head high and be proud of who you are, and how you arrived at that as a product of your friends and family.
Yours sincerely
Rich
For more information and support about life with XP please click the link below:
If you would like to take part in our Letters to my younger self series, please contact our youth coordinator James Brooks at jbrooks@rarerevolutionmagazine.com