13 May 2015

'My illness doesn't define me'

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.


  1. 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.

    1. John you're still here fighting the good fight, that's something to be proud of Xx

  2. First 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.
    Thank you so much for sharing.


    1. Thank you for your kind words Nydia & for taking the time to read my blog Xx

  3. Wow, 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!

    1. Wishing you the best of luck with your blog, here's to raising plenty of IBD awareness Xx