IC awareness day 30: raising awareness

What will you do throughout the rest of the year to help raise awareness for IC? Who will you talk to about it? What do you pledge to do to get the word out and offer a positive environment for fellow ICers.  What methods of awareness can you use to show the public this is real?
In this blog, I explore many of the issues surrounding IC in the context of my own life as a single mum of 2 in the U.K. Its readership is growing. I am receiving positive feedback from IC sufferers who are so thankful I am putting into words the things they feel. This is real way of raising awareness of the realities of living with this disease. On the back of this, it's possible I'll have an article in the national press over here fairly soon.

I have also started to talk to people more about my condition. If people ask how I am, sometimes I don't just say 'getting there' or 'not too bad', but I stop and tell them a bit. Sometimes they don't want to know, which is fine. But sometimes - more often than I would have predicted - they do. People listen, and can't believe it - 'you mean, you have cystitis all the time? No way! That can't be possible'. And then they listen some more, and take it in, and go away and process it. For every one person who does this, awareness spreads.

I have connected with an IC sufferer not too far from where I live and am hoping to help set up a local monthly support group in addition to the online support I've found at IC-Network and the COB. I might ask at the hospital if i can put up a card asking who is suffering with similar symptoms. This card in itself would be read by hundreds of people coming in and out for appointments.
     
So I plan to do what I can, within the sphere I'm living and with the low energy level I have. If we all do a little, a lot will get done in terms of showing the public that Interstitial Cystitis is really affecting tens of thousands of people worldwide - if not more.

Much, much more money needs to go into research in my opinion. It's not enough for doctors to throw up their hands and say 'we don't know'. It just is not good enough. It's not enough for other people to think we are exaggerating or it is in our heads or it simply can't be possible. It is possible. It's happening to us; we're living with it.

In terms of medication, we need to know what aside from Elmiron (which as yet I have not even been allowed to take!) and nerve blockers/antihistamines (which do not work for me) might substantially help us. I have realised that I, for one, cannot spent the next decades of my life on opiate painkillers. I'm only 35. I'm not standing for it. More research into alternative therapies and supplements could reap huge benefits for many of us; the small studies into Aloe Vera and Cystoprotek are so promising and such a ray of hope... but the big drug companies are not funding them so they remain too small to be definitive. They need repeating on a much larger scale. For this, we need public awareness and sponsorship. We need this disease to be common knowledge, like arthritis, fybromyalgia, ME or other chronic pain conditions.

So we cannot stop pushing and fighting for our brighter future, however dark things seem when the pain is unbearable and you're on the toilet every fifteen minutes and so exhausted from it all you feel like giving up. Even if there is no 'cure', there are no doubt a number of remedies that as yet remain unexplored and thus unused. And in the end, perhaps, a 'cure' will be found, and some of that will be thanks to each of us fighting this good fight. We are not fighting just for ourselves, but for each other.