Friday, August 17, 2012

Guest Post: John's Story

We have the pleasure of introducing not only a gutsy guy, but a gutsy writer and advocate for those with IBD! Make sure to check out his book!

I first noticed something was wrong when I was 18, in my first year at university, but it was to be another seven years of dramatically worsening health before I was diagnosed at the age of 25, so I suppose I was a little bit older than the average for the Gutsy Generation. It is now just over 29 years since diagnosis day, so I thought it might be worth looking back at the thoughts and fears that swirled through my head then compared to what actually happened. I should mention my diagnosis of, “Good news Mr. Bradley, we know what is wrong with you….Crohn’s disease”, was followed in the next breath with, “…and you need surgery right away”, so I had little to no time to process the implications of the illness itself as my mind was fixated on the prospect of going under the knife.

In some ways this was helpful as it focused my mind on what I think is the single most important question after “How long will I live? Oh, pretty much full lifespan then? Phew!” which is, “What will the impact be on my career?” This point of view may surprise you. After all, questions such as, “Will girls be turned off by my tendency to uncontrollably fart at the worst possible moment?” are the stuff of nightmares, but I will come onto relationships in a moment. At the time of my diagnosis, I had a job but didn’t have a girlfriend, so my focus was on the workplace.

So I walked out of his office about to take 4 months off work for what was, back in the pre-laparoscopic days, major surgery. In the two weeks between diagnosis and surgery, I realised several key things which have stood me in good stead:
My previous carefree life was over; I now faced a life of either feeling unwell, taking drugs that would do strange things to me, or having surgery, or, as turned out to be the case for the next ten years, all three simultaneously (I had 5 surgeries in the 10 years after diagnosis.)
With that in mind, I asked my GI what he thought might be the implications for me in the workplace? His reply was the worst piece of advice I thought I had ever heard in my life: “Umm, there shouldn’t be any really; I’d just carry on as normal.” No, no, NO! Normal was me never being off sick, never feeling less than 100%, pushing myself to the max to scramble further up the greasy pole. What I needed to do was to find a way to keep scrambling up the greasy pole while taking a cumulative two years off work in the next ten and feeling less than 100% and/or going crazy on steroids during the other eight. 
Ergo: I needed to think differently about my career than I had done to that point. I needed to be in jobs where I could still deliver expected results when I was feeling dreadful for months on end. I needed to be in a job where I could go to the bathroom fifteen times a day and it not cause issues. In short, I needed to accommodate the reality of having Crohn’s into my career planning, not ignore it.

Twenty-nine years later, I can report that I think I did the right thing in doing so. I ultimately had a very successful career in packaged goods marketing, rising to the dizzy heights of Senior Vice President. I didn’t get there as quickly as I might, or by the most logical route, but I got there. There were times when my health was poor I took or stayed longer in jobs that were well within my capabilities so I could still be a valued employee when I was running on 70% or less. Other times, when I was feeling well I took the risks. Conversely, I have met hundreds of IBD-ers at clinics, in hospital wards etc, and far too many of them seem to have taken the bad advice, ploughed on regardless of their new circumstances, and ended up not only losing their jobs but failing to get a new one. For me Crohn’s has been life-altering; for those poor souls it became life-ruining.
Moral: you are probably going to have Crohn’s or UC or a bag during your entire working life and, with a bit of forward thinking and flexibility, you can still achieve your dreams, they just might not be the same dreams you had before.

Relationships was my second worry after career. Will I find someone who can live with the illness? Can I still have children etc etc. Here I will be less prescriptive: I don’t think my Crohn’s made any difference. I got married two years after my diagnosis when I was experiencing a very ill phase, and our 19-year-old daughter is just starting her second year at U of T. Of course in those two years I obsessed about “How and when do I tell someone about my Crohn’s?”, “What if I keep dashing to the toilet while we’re at the movies?”, as those thoughts and more are inevitable. At that age we also obsess about having pimples on our noses, a bad haircut and wearing the wrong brand of jeans.

The bottom line is that you will only find your IBD a barrier to relationships if you make it so. If someone won’t date you because of your illness then thank your lucky stars you found out they were completely unsuitable as partners before marrying them. In short, the right person will still be the right person whether you have IBD or not. Your job is to not make yourself a recluse because you think your IBD will be off-putting to others.

29 years ago I was filled with foreboding and doubts about what life would hold for me. Looking back, the worries I turned into positive action were helpful, the worries that I just fretted about were unhelpful. We don’t get to choose the hand of cards life deals us, but we do get to decide how to play them. An IBD diagnosis changes the hand we have been dealt so, to me, it makes little sense to keep playing the way we were before. Changing how you play your hand to accommodate the IBD card isn’t giving in or giving up, as long as you are still playing to win.

Author of “The Foul Bowel: 101 Ways to Survive and Thrive With Crohn’s Disease” and you can follow him on Twitter @Johnbradley1

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