As this ordinary Monday comes to a close to many, I sit here going into the final few GMT hours of World IBD 2014 with some unrest.
Should I show them? No one has seen these before, I’ve not allowed myself to bear these photos to other humans, not even other IBDers.. what am I scared of? What am I afraid of, apprehensive about? Why not be brave and share you, Louise?
Yes, I even full first named myself, that’s how much of an indecision this is.
But, I want to show people what IBD can do to you, of what it did to me. Of what no one but my parents saw outside of the hospital. Of how different it made me, how it changed me. How much my illness showed on my surface.
I was diagnosed with Crohn’s Disease in September of 2012. I had spent the past 6 ish months prior to this with mild symptoms, none of which would ever point directly and strongly towards IBD. At most, I thought I was just stressed out and I was having a hard time eating and keeping food in me. But in reality, I had suffered from some sort of digestive problem for majority of my late teenager years, and definitely throughout my four years at university. But in August 2012 I got really sick and I never really came out of it, until they scoped me and found my very ulcerated and scarred colon.
Things did not improve on diagnosis. I continued to tank pretty rapidly, no matter how much I improved one day, I always took two steps back. It was a uphill battle, and I would spent the autumn in and out of the Gastro ward. My medications didn’t help, I could hardly keep food in my system long enough to help my thinning frame out, and I still could not stop visiting the bathroom. I was a hermit in my own house. I was desperately alone. I was depressed and angry and generally unhappy. On my final hospital visit, I had dropped down to a shocking 7 stone and could hardly stand. I was finally sick enough to get the really strong drugs; biological treatment.
This is what I was on the first evening after my first double dose of Humira; mid November 2012:
I was just over 7 stone here, wearing size 8 clothes. I had a flat but still bloated belly, tiny boobs (compared to what I had always had), I could feel every joint in my body sticking out; my hips, knees, thighs and shoulders were particularly jarring. My legs were so thin and pale, I had lots alot of my thick hair and cut it all off (which I regretted but now love) and looked under fed and unwell. But despite that, I had just started Humira and was finally not feeling sick or at all out of control of my bodily functions. I could feel some of the power coming back to me, not to my disease.
I was so small and thin. I can hardly believe that this was me.
I sometimes wish I was looked like this again. Not felt like this, because nothing was as horrible as those 6 months. I might have clear skin, be thin and have a flat tummy, but I was sick. I know I am still sick, but in a different way. If anything my disease is covered up (through many many layers of fat and confidence, I hope!) But still, I hate all this weight gain and how difficult it is to shift it, let alone how much I battle with my self confidence nowadays.
So, as you can see, IBD affects me even now, even now that I am not sick like I was above, even now that I have good medications, remission and a great GI, even now that I have a new job and lots going for me, IBD still affects me EVERY DAY.
That is what is neglected. That is what is missing, for me at least, I feel lost when everything is going well, health wise, everything else become more acute – my confidence, my relationship, my friendships, my job, my struggled, my fatigued. Because no matter what happens, if people do not see you or hear you in pain, they assume that everything is okay. IBD is not just physical battle, it is a emotional battle too.