IC awareness: Day 10-advice for newbies

Tell a newly diagnosed ICer what your primary resources are for finding out information about this condition. Tell them what, in your opinion, are the best places to look for reliable facts and that there are in fact, plenty of other ICers they can reach out to. I know it sounds redundant but you'd be amazed at how many newbies aren't aware of the resources that are out there for them to utilize. Give them a run down of what works best for you. It makes a huge difference

Right - this is one I can really get into.

A year ago, almost to the day, I got ill. I bled heavily from my backside and was rushed to A&E. The illness began in my bowel and stomach and somehow - inexplicably - ended up in my bladder.

A year ago, I knew nothing of Interstitial Cystitis. I had never even heard of it. I think if I had, I'd have thought of it as one of those illnesses where people whinge and moan too much, and it's probably more in their heads, or they just haven't seen the right doctor and got on the right antibiotic. I would probably have thought - it's impossible to have cystitis all the time. That just can't be right. They must be exaggerating, on some level, surely?

Those were my prejudices a year ago. That was my total lack of knowledge.

In the past ten months of living with IC I have learnt a huge amount - about myself and my ability to cope (or sometimes not cope) with chronic pain, about other people (from friends and acquaintances to total strangers) and their kindnesses and their limitations and sometimes their unwitting hurtfulness when dealing with me having this illness. I have learnt about the ins and outs and rights and wrongs of the UK medical system. I have learnt about calming down and being patient. And, of course, I have learnt about the illness itself. Mostly I have educated myself.

My first primary resource was my GP, but I soon learnt that she didn't know much other than bacterial cystitis. She said what I had was 'extremely rare' (it isn't so rare, actually, just much misdiagnosed) and was completely befuddled when antibiotic after antibiotic failed.

My second resource, then, were the consultants I was referred to - first a general physical/kidney doctor, then a consultant urologist, The Big Cheese, who is in my good books at the moment for putting in the Elmiron application. Of course urology consultants know their stuff; but they know surprisingly little about IC. Again and again I've heard 'we just don't really understand it'.

I ordered a couple of books in the first couple of months of diagnosis but at first I found them of limited benefit, although I have now gone back to 'The Better Bladder Book' by Wendy Cohan, which really annoyed me when I first read it, as I am slowly going gluten free. 'The Interstitial Cystitis Survival Guide' by Robert M Moldwin is a great resource - I found this later.

I turned to the internet, to Wikepedia first of all, to NHS information pages, then to COB in the UK and to IC-Network in the states. There are many other internet resources but those are the two that I use, for information, updates on research, and best of all the Forums, to connect with other people with IC and know that I am not alone. I remember my first phone call to someone on the helpline of the COB; it was so wonderful to actually speak to someone who knew what I was talking about. I would recommend both of these places without hesitation.

I've also had some less positive experiences online with depressed, jaded people, but wouldn't want to name the websites; you may have come across them; if you do, my advice is to get out quick.

I've connected with one IC sufferer locally and we are thinking of setting up an informal group, perhaps meeting monthly, of local people with IC. It would only be a handful of us to start with but I think that face to face contact might be even better than the internet.

I've been offered support groups at the pain clinic, but to be honest I don't think sitting talking to people with arthritis or back pain would help me particularly. They wouldn't know what IC was and I'd just spend my time repeating myself. To be honest this is partly the case even with my family and best friends; they help on a practical level when and if they are able, but they don't know what it is to actually have this thing, and of course I look ok - I'm not underweight or overweight, I don't really look ill, just often tired. So how can they really understand? They don't. I'm learning to stop expecting them to, though this is a tough one, as I sometimes end up feeling very alone. One or two special people are there for me to really talk to when I need and I can be real; I can sob and stamp my foot and they will just hold that space. Anyone like that is golddust and worth holding onto.

I've also had to go deep into myself as my main primary resource. Drop the things, commitments and people who overload / poison / stress my life. I've had to give things up: voluntary jobs I wanted to do, alcohol, which has always been a great mental release for me, coffee, which I loved. But I've had to search for what I can best do to help myself. Keep things simple and in the day - that's what I try to do. Good deeds for others where possible, just something small, without telling anyone. Gardening is soothing and healing. Alternative therapies may prove very helpful.

Try to smile in spite of it all. I have days where I can't; but most days I find I can smile and laugh even if the pain and discomfort is really bad.

And I'd advise you to work out what is important, as your energy will be less and therefore your time more precious. I have had to prioritise: what is really important to me? It comes back to my children, writing, reading, music and love. And if I had to choose three: my children, love, and writing. That's all that really matters.

That's all that has ever really mattered - but this illness has highlighted that for me.

Go slowly, I'd say to a newbie. This is a horrible condition, and it's hard when people have the prejudices I had a year ago, but it's not their fault; they just don't know about it. Go gently and try not to wear yourself out. Don't expect too much of yourself or of others. You are at the beginning of a journey and where it will end you cannot know, so just keep on taking step after step and don't look too far ahead or behind.

Rest. Take stock. And above all, be your own friend and advocate.

Never, ever, ever stop fighting for your own recovery.