Medicated Shell

I feel empty.  Hollowed out.  Is it the disease or the drugs in my head making it hard for me to think clearly?

I have started talking more openly about my condition and my options.  I think I have started talking about it because people have finally started asking.  I made the effort after the diagnosis, I tried to explain my position – and in a lot of cases I was met with contempt, or no desire to know the full story.   I am not the sort of person who pushes the point.  If you don’t want to be involved with what’s going on with me and you don’t reply or contact me, then I don’t go out of my way to force myself on the obviously unwilling.  This is a hard time for a lot of us, people are losing their jobs, interest rates continue their upward march and long-term relationships are crumbling around me.  It seems that 2010 has not been a good year all round.  I really suffered with the reception I received when I started to try and tell the people in my life about Crohns Disease.  Even though I took about 6 weeks to start spreading the news, I don’t think I was ready to talk about it and most were certainly not ready to hear about it.  During this time I really leaned on a few people I would sooner call family than friends – and they have responded by giving me space at the beginning then offering their unwavering support when I started to openly discuss it.  I have thanked them in the past but I don’t think any clumsy words I have offered to them can express what they have done for me.

People are now starting to come to me, asking about what’s going on, trying to understand a disease that even the doctors don’t understand fully.  The “at least its not cancer” has thankfully run its course.  People realising that Crohns is a pretty horrific disease and that if combined with complications, it tries very hard to put you in an early grave.

Before the diagnosis, I felt a little reassured by the constant claims it was just a food allergy.  I had it in my head that one day I would just figure out what was causing me to get so sick and it would stop.  Hearing “incurable” in the midst of any diagnosis brings you back to reality with a thud.  Then you read about the disease and figure out that there is no effective treatment or cure on the horizon.  It dawns on you that you will most likely have to live in pain and with drug side effects, every day for the rest of your life.  People with the disease come to terms with this a lot quicker than family, friends and acquaintances. There is no way they could know what an attack consists of – you just decide not to talk about it cause the doctors have told you there is no way you can feel that bad – until they realise what you have.  You feel like you are the mental one, like you are making all of it up, I mean surely the doctor knows best.  But they don’t know what’s best, Crohns hides, parading itself as 100 different, lesser diseases.  Its so rare that doctors often don’t consider it until years of you trying to tell them there has to be something more seriously wrong.  Other people can’t understand what’s going on in your head cause they haven’t battled for years in silence.  But I know now, there is a willingness to know more, but it has to be on their terms.  That kinda sucks, cause sufferers come to terms with the situation much earlier than observers, and they like me, get the feeling of intense and absolute segregation.  Its not cause they don’t want to know though, its because its too soon for them to know.  I hope now that its started, more and more people will start talking to me about the events of the last 4 months.  The sentence “how are you really going” has been strangely liberating, even though its only been used twice so far.  Its liberating cause every time I explain myself, I am getting better at it, and every time I tell my story it seems to hurt just a little bit less.  That’s why this blog has been so important for me.  If I didn’t have this outlet during the observers acceptance period, I would have had almost no one to talk to and I would have just let this disease consume me.

I also feel like I am doing some good.  Every person I reach on this blog and in my everyday life, is one more person who will have at least some knowledge about this damned disease.  Every person who learns and knows about Crohns disease is one more person that can diffuse the belief that it’s something that should never be spoken about.

I am one of 750 people this year in Australia to find out I have Crohns Disease, and I am one of 60,000 people who have been diagnosed.  That’s not a lot of people when you consider the population of the Gold Coast is about 500,000 (that means 50 people on the Coast have Crohns disease and about 40 of those exhibit symptoms).  The more people who are willing to listen and support Crohns sufferers, the less alone we will all end up feeling.

I feel empty and hollowed out.  But less empty and less hollowed out than I did yesterday.

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