Welcome to A Diary of IC

Disaclaimer: The content of this site is gathered by experience and research. For more in depth legal advice, you will find links to reach solicitors or helpful organisations throughout the site.

IC is Interstitial Cystitis.

People’s paths come across IC for so many reasons. If you're suffering yourself, know someone else who does, medically investigating IC or simply wanting to understand. One incentive for this website it to encourage paving the way for children or those in future, who will be experiencing the same symptoms that us diagnosed adults fight to have acknowledged. Our aim is to increase awareness in any which way, provide information to help IC sufferers to navigate through the knockbacks, raise interest enough to pursue further studies and to let all IC and PBS patients know that they are not alone, we are all on a journey and we have this part of it in common.

If you are a sufferer or suspect that you have Painful Bladder Syndrome or Interstitial Cystitis then you have found your way into the drawn out process of diagnosis. On the diagnosis page, you can find information on how to fast track your tests for IC which will give you diagnosis or elimination; this empowers you to guide the investigation if required. Unfortunately, it is within the experience of so many sufferers that at least one medical professional met through the journey will be unempathetic, uninformed or undereducated on Interstitial Cystitis, so knowing the route will ease the journey for you. Plus rare conditions are always harder for GPs to throw out there as a diagnosis or even a possibility (They like to be sure and it may not be a subject they’re aware of either, I suppose some people would hold them accountable or take it as gospel for even making a suggestion so this self care mechanism is a little understandable). 

If you already have your diagnosis, you have to live in this world with an invisible illness. This means potential scepticism and criticism from people that know you and those who don’t. There are those that may have seen you online, met you through employment, professionals or those without a ‘specialist subject’. People develop opinions of you based on their own experiences and their relationship with you, like a ying and yang, that can make the opinion definitive in their mind. Many people cannot comprehend the symptoms you are likely facing, whether that be pain, frequency, insomnia, nocturia, or more. What does it mean if someone can’t comprehend your pain? They need some kind of understanding that relates; an analogy, a visualisation or perhaps a study, but the perfect solution would be to release judgement and to listen and be listened to.

Many are unable to really relate, but it does not mean we are unvalidated. No! It just means that they are not aware of us collectively yet. You will find many pages of advice on the legal aspects of living with Interstitial Cystitis in both the UK and the USA, these are written not through qualification but through experience of self representation on numerous occasions and extensive research. Hopefully these will equip some of the wonderful people who have been dampened by IC and PBS, to reach your potential and bounce back from what seems like a loss. Being equipped to defend yourself means responsibility, self respect, moral awareness and the power to take back your life when you think you’ve lost it to a condition. You are your own power honey, and we are here for that.

Enough about us bladder ambassadors for a moment, because some of you visitors are in fact relatives or associates, therefore your interest in this cause is extremely powerful, so thank you for being here. Now you could be feeling a whole heap of ways about knowing someone who has Interstitial Cystitis, so we have a 'knowing someone with IC' page dedicated to those around IC, which might help you relate, support, normalise or adjust to the journey of IC and increase your understanding of that person and their journey. People who suffer chronic conditions become at one with the condition eventually, so you may see it as a range of things like them being happy, strong, masking it, whichever way you think they are handling it, you are not to the core without knowing what they have. Understanding and imagining it can be difficult, which makes it hard not to pass your own judgement; so there's nothing more considerate than taking the time to learn a little, like what is IC?

Being diagnosed with Interstitial Cystitis can be a very draining process for many patients. First is the debilitating diagnosis, misdiagnosis, testing element. Diagnosis means accepting that you will never be the person you were before that, which involves a lot of adjustments. You go through a stage of grief, towards the person you once were. The severity varies, of course also infatuated by the intensity of your symptoms. Each patient has a number of symptoms, but the body reacts differently to ranges of remedies, much like they fluctuate between people with prescriptions. The condition is not yet curable, doesn’t have much awareness, is considered ‘rare’ rather incorrectly it seems and changes the world for a sufferer in so many ways.

Whoever you are and however you feel at this precise moment, you are not alone through these steps, it does not end your journey, for round the corner of adjustment, there is a new beginning.

See Your Page to read stories of IC warriors, and join in on The Forum.