I receive quite a lot of messages and
emails from young people who have recently been diagnosed with IBD. It makes me
happy and sad in equal measure; happy that they reaching out to talk to someone
about their worries (albeit a decidedly unqualified person like me), and sad
because they are struggling with something incredibly distressing on top of all
the usual, more common yet challenging aspects of ‘growing up’. Some of them
are just looking for reassurance and advice on how best to live with a chronic
illness; some of them don’t want to live at all.
I do of course reply to these messages, as quickly as I can
and with as much information as I can, but I often feel at a loss as to what to
say to soothe a young man or woman who’s experiences perhaps mirror my own
fears from several years earlier. I try to think about what I wanted to hear
when I was diagnosed: what might have made the whole thing a little less scary,
and I hit a frustrating brick wall.
I was lucky myself in the sense that I was (officially)
diagnosed when I was in my mid-twenties. I certainly didn’t feel lucky
of course; I was heartbroken, confused and devastated. I imagine it feels that
way irrespective of your age mind you, we all have different tolerances and
being told you are never getting better stings regardless of what stage in your
life you are at.
So I suppose what I’m clumsily trying to express is that I
feel at a loss at times to help those who are experiencing what I have. What I am.
Then I try to take a breath and remember that all I wanted
to hear when I was first sick was that life would go on. I still do. Don’t get
me wrong – I undoubtedly would not have thanked anyone for spouting that
at me at the time of my diagnosis; I didn’t want life to go on if I’d have to
carry this disease with me for the remainder of it. I didn’t believe it and I
couldn’t accept it. But as I’ve grown alongside my illness (I’m now in my
mid-thirties), I’ve found my outlook has changed along with my priorities. All
I care about now is my own happiness and that of those around me. My illness is
still a huge part of my life and always will be, one that can consume me from
time to time, but those moments pass. Chronic illness is a slippery path
whereby sometimes we wobble a little, sometimes we can’t get on an even keel,
but nevertheless we never lie down to it; we don’t have that luxury.
But the truth is, our life does go on. We are incredibly
lucky in that sense. We will have to make adaptions to those lives to make room
for this illness, we don’t like that but it’s easier than trying to bat it away
like a pesky wasp at a jam sandwich. We have to accept it and stop fighting its
basic existence. Denial is fruitless and prolongs the period of time it takes
to come to terms with having an incurable illness.
Don’t get me wrong here though, I’m not implying ANY of this
is easy; sometimes I even have a little cry myself when I feel low – I often
feel I’m back to square one with this and the frustration of that can be
overwhelming. But if I’ve learnt anything since I was diagnosed it’s the
importance of talking. Talk to your parents, your friends, your nurse, talk to
me! Don’t push yourself into it – there’s no shame in that either; the last
thing I wanted to do at first was talk about this with anyone, but
eventually that changed and it became more of a comfort and camaraderie than a
fear.
So please remember that you are not alone.
Things will get easier and you will learn to live with this.
Like every challenge in life it feels monumental at first, but the more steps
you take towards dealing with it the easier it becomes. I’m not in any way
saying I love having a bowel disease – I hate it – but it has also taught me
boundless things about my own body, its shown me a strength I never thought I
could find and its brought me closer to the people I love. It’s made me value
my own life, and allowed me an opportunity to help me help you to value yours.
So if you take anything from my ramblings let it be this:
disease is hard and scary and intimidating, but your life is worth the
challenge.
