IC Journey


Posted in Uncategorized by LJ Johnson on April 14, 2010

You know, I will honestly admit that when it was suggested that IC might be the source of my problems I went out and researched it on the internet. When I was finished, I said, “I’d rather have cancer” (I was sick enough that we were worried that it might be what was wrong). At least with cancer if they don’t cure you, you get to die. At this point I’m not necessarily advocating that point of view, but I am still not ashamed of it.

Yesterday, though, was harder than my diagnosis day, to be honest. I got a text message from my sister, who has been dealing with increased frequency, severe pelvic pain and already has a history of endometriosis and IBS. “No infection, sucks to be me.”

We are just over a year apart (14 months), and my diagnosis was 11 months ago. It has been suggested that interstitial cystitis is not a disease, but a spectrum of diseases that includes one which is autoimmune in nature and genetic. My sister’s symptoms and the fact that infection has now been excluded, suggests that she, too, has interstitial cystitis, and that ours most likely is genetic.

I know it is irrational to feel guilty. I didn’t GIVE her IC, I know this. I still do, though, just the whole thing about being first to be diagnosed makes me kind of FEEL like I did. Further, my fear about some of my son’s strange bathroom behaviors (I’m assured they are just normal – boys will not pay attention to the early urges and then REALLY have to go), and the worry that this is possibly something that he might deal with in his future.

I cried. I didn’t cry after my own diagnosis, even though I knew at that point it was incurable and had very few treatments. It was just something to address and move on. Somehow it’s harder to picture her enduring this than me. Not sure why. I guess because I know my abilities, my resolve and my strengths. In a very real way, I don’t know hers. She is very reserved, and never out-going. I don’t know how she can or will endure this alone, and don’t trust her to reach out to the greater IC community, most of whom are always willing to encourage and help. It will be the hardest thing for me – getting her to be willing to share her experience with others who are going through the same thing, so she can learn that it is “normal,” in its own way. A new normal. She needs to know this because it reduces the fear and the anxiety. Finding others going through the same thing helps.

At least she’ll have me. I bought her a membership to the ICA, and also purchased the introduction to disability packet and the personalized disability packet, so she can be prepared to apply for disability once the diagnosis is confirmed. Even if she finds a treatment that she responds to, the most hopeful IC specialists say that it takes two years for someone to reclaim their life after diagnosis. That still assures that disability is necessary and helpful.

What a journey. A new road, for certain.