As patients with chronic illness I certainly feel it's vital that we are engaged, and concerned with learning as much as we possibly can about our conditions. It’s important we continue to maintain an active interest in medical advances and potential research into finding a cure for our illness. It’s interesting and encouraging, and allows us to maintain a level of hope that one day we might be able to manage the condition more effectively. Or, best case scenario, be freed from the nasty shackles of Crohn’s disease entirely.
However, in awareness campaigns and publications used for spreading the word, I rarely see any of practicalities. Where is the advice on how to live alongside Crohn's whilst it’s here?
I do see plenty of negativity at how cruel it all is, and how wrong it is we should have to suffer with it on a daily basis. I see a culture of competitive suffering whereby patients want to outdo one another with bigger and better scars, more traumatic ops or fewer bits of their insides.
I'm at a bit of a loss to understand these urges. I just can’t see any benefit in it. Yes, I would certainly say my own blog is by all means not endlessly filled with joy, and I don’t spend my life with Crohn's Disease skipping through forests with robin redbreasts whistling on my shoulder. But when I write I try to think of what I, as a patient, would want to read. I consider what words might help me to understand my disease and help me cope with it. What might help to make someone like me feel less alone and isolated?
With the greatest of respect I don’t want to read about your stitches and staples, I don't particularly want to see your stomach or your scar. No, I'm not prudish, and no I certainly don’t believe our diseased bodies are ANYTHING to be ashamed of, but I don’t necessarily want to parade mine for all to see again and again. It’s MINE. It’s private, and it’s covered in my own history and experiences. It has that birth mark on it I've had since I was first brought into the world and that big scar on it that serves as a reminder of how I was saved from going out if it. I has that one long toe that I've hated since I first knew what hate meant and it has that miraculous rack that has gotten me many, many free cocktails.
I want to feel my best and enjoy my life when I am well enough to do so. I've found myself avoiding various groups and sites because I don’t need to see more scars, wounds, cannulas or all the medications you are taking - I HAVE ENOUGH OF MY OWN. I’m not even wholly convinced wearing purple and showing off your battle scars is the way to garner publicity of our condition either, I think we should focus on trying to educate rather than shock. Of course I’m all for anything that helps to make patients feel less isolated in living with chronic illness, but for me it all seems to remind me of the negative aspects of IBD.
I want to feel that I am in positive company, not shrouded by a cloud of negativity. I am well aware how new-age that all sounds but it's certainly true that we have enough to worry about without taking everyone else’s' on board. I want to be able to see the good in my life and try not to blame everything wrong in it on my illness. If you do you may find that you’re certainly not alone in your plight, but you may end up alone in your attitude.