My illness does not define me...
Here's a quote that I've heard many times over. For a long time I
sat on the side of the fence which declared 'my illness doesn't define me' and
in some respects you're correct, your illness (can be) a small portion of your
life. In the sense that there is so much more to you, there are many more
building blocks/puzzle pieces that make you into the person that you are today.
You may choose to use your illness as a way of pushing yourself to reach for
goals that you'd otherwise not have aimed for or maybe you're stronger today
due to what battles you've had to overcome.
There is no denying that having a chronic illness impacts your
daily life whether we choose to embrace this fact or not. In my case having
Inflammatory Bowel Disease means that a lot of the days decisions are based
around taking medications, avoiding certain foods, filtering through the types
of invitations to certain events/days out and activities etc. It's a constant
thought whether you're aware of it or not, it's usually lurking at the back of
the mind.
Obviously I can't speak for everyone but I'm sure that many would
agree with me when I say that having a chronic illness has an impact on the
people who they surround themselves with. I've heard countless times of how
once someone is diagnosed with either Crohn's Disease or Ulcerative Colitis
that a portion of people pack their bags and run off. Which is such a shame in
a sense as at the time of diagnosis you need your friends/ loved ones more than
ever. However the opposite tends to happen where a certain portion of people
who were once present in your life move on to other pastures. Those who are
left are the ones we all treasure most; the friends, family and loved ones who
stand by us through thick and thin not the flimsy acquaintances who never made
the cut.
Truth be told the only option those diagnosed with these illnesses
have is to 'suck it up and get on with it' (What a stupid saying anyways...) We
are supposed to 'make the most of it' and take life by the horns. Usually this
is how the years pan out as we all simply take it one day at a time HOWEVER
there are times/days when I shut down, I curl up into a ball and I want to ball
my eyes out.
(Yes, me...the woman fundraising, advocating and running a global awareness
campaign I cry :P Get over it ha)
'Just don't think about it' <-- hands up how many of us battling a daily fight with Inflammatory Bowel Disease have been told to 'not think about it' or 'think positive'.
'Not thinking about it' is not an option for me as my illness effects many of the choices I make throughout the day. Have I drunk enough? Which foods will land me up in A&E? Have I remembered my medication? Have I ordered enough medication? When's my next appointment/check up? Have I filled in all of the outstanding paperwork? How many people will I end up unintentionally p*ssing off today?
'You're getting consumed by your illness' <-- anyone heard this
one? Yep me too! Truth be told, it's nay on impossible to get through a single day
without thinking about my chronic illness in some way shape or form. Most days
I 'make the most of it' as complaining and shouting 'why me' gets you
absolutely nowhere but doing so doesn't stop the random moments when it all
becomes too much and I become tired of playing this game.
I am tired of being poorly I'm sure many others would agree, but I
too am tired of not being able to enjoy the simple things in life. I miss the
simple pleasures in life that everyone takes for granted. IBD is a HUGE part of
a person's life, not only for the person diagnosed but it effects the whole
family and your network of friends.
I find myself encouraging you all to find your own voice, mainly
because I have seen first had what an impact one lone voice can make. One lone
voice is helping to educate others, one lone voice is helping to fund-raise,
one lone voice CAN and DOES make a difference! You only have one life, so why
spend it hiding? Be the person you were always meant to be ....or at least be
the person you deserve to be, without hiding. You are you and you have a lot to
give! So what if your body is broken or you are an emotional wreck...so was I!
So am I. I feel I can sit here and push you to gain a better/brighter
future...for I have been through the same journey myself. I have NO IDEA where I
am going, what the heck I am up to or where I will find myself in another years
time. All I do know is that I hope I am still trying, for that's all I can ask
of myself.
When I began my blog my mind was turning to mush as it had been so
long since it was put to good use. I found myself doing puzzles and quiz books
just to keep my mind active. These days I have the creativity and outlet to
express things through my blogging, advocacy and campaign work which reinstates
my belief that although my body is broken I still have a huge amount to give
the world! As you do too..find that one thing which challenges you. I'm sure
you've had to abandon some of life's plans along the way but make new ones. Set
yourselves something to look forward to for these days help us to get through
the rocky road ahead.
Am I at peace with my illness...NO; but I am learning to live
alongside my illness. I am not as of yet at one with my illness but I am slowly
navigating my way through life alongside my chronic illness. My wish is for you
to become comfortable discussing your own journeys with Inflammatory Bowel
Disease, adapt life to better suit your needs and that you too can find a
support system that works well for you.
So again we come back to the question of, how can we say a diagnosis of a chronic illness doesn't define a person when it impacts so heavily on the choices we make, the people we surround ourselves with and the ways in which we adapt our behaviour, careers and routines? I suppose in some ways we try to push our illness to the back of our minds so that it doesn't take up all of our time but I mean that's still a pretty difficult feat. Maybe accepting that your chronic illness defines you is in some ways 'letting the illness win'? We'd all like to prove that we are stronger and ready to tackle it head on right? I believe that your chronic illness shapes the person you are today whether for better or worse, you have a small part of your character which is defined by your chronic illness.
I fully agree wit,h you Victoria. I worked for years struggling with the illness, gradually acquiring additional secondary conditions and not really functioning in my work. I can say my personal life, social life and because I was medically retired as a civil servant as a result of yet more surgery, work life, has formed and continues to be the dominant thing about my life. I try my utmost to beat the illness and not let it run my life, but if I am truly honest, I have failled over time.
ReplyDeleteJohn you're still here fighting the good fight, that's something to be proud of Xx
DeleteFirst of all, wow, you perfectly described what it's like to have and live with IBD. At the moment I'm still struggling with accepting it and learning how to live with it. It's only been diagnosed three years ago and the past six months were the worst I ever had. It affected my job, social life and my emotions (I'm anxious all the time). But although I had moments when I couldnt live with it anymore, due to feeling so broken, I am so lucky with my family's and true friends support. Reading your blog also motivates me more to try the best I can to learn how to accept it and to learn how to live with it.
ReplyDeleteThank you so much for sharing.
Nydia
Thank you for your kind words Nydia & for taking the time to read my blog Xx
DeleteWow, very well explained. I reached a stage where I started saying.... I am sick and this is who I am. IBD is a major part of my life and I have accepted that. I started an IBD blog recently. I hope one day I will be able to support as much people as u do!
ReplyDeleteWishing you the best of luck with your blog, here's to raising plenty of IBD awareness Xx
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