Though my IC (i.e. bladder pain) officially began when I was 32, I spent much of my 20’s struggling with many of the conditions we now know are related to IC. I had vulvodynia in high school and college that felt like a painful yeast infection. Despite many trips to the doctor, they rarely found active infection though I was often crying in pain. My Ob-Gyn kept saying “You have the most sensitive skin in the world.”
Irritable bowel syndrome, a very sensitive stomach and gut struck during my first career job after college. There’s nothing worse than commuting on a bus 90 minutes each way with unpredictable diarrhea, right? Three years of almost daily bowel cramping ended when an elimination diet revealed that I had suddenly become sensitive to oatmeal, chocolate and lettuce.
Migraine’s paid a brief visit while I was in grad school. My eyes became so dry that I barely produced tears resulting in a diagnosis of SICCA, a variant of Sjogren’s Syndrome. I also struggled with what I called “sick all over” days where I felt incredibly ill but literally couldn’t tell you where or why. I just felt physically bad. In hindsight, we now know that IC/BPS Subtype 5 (Central Sensitization) connects the dots of my life but, back then, I was frustrated, confused, worried about my future and felt unworthy.
Today I just had a remarkably similar conversation with a 32 year old man with IC. He too has struggled with various conditions and finding his place in the world. He, like me, had family members who weren’t particularly sympathetic at times. Sometimes we both felt “less than” our married, more successful siblings.
Time, of course, teaches us all that noone is perfect, that illness and injury can strike anyone, at any time. In the case of IC/BPS Subtype 5 (Central Sensitization), we can also end the blame game in favor of the more rational explanation of inheritance. You see, in my family, every woman on my mothers side has “sensitization” for three generations, including a sensitive bladder, bowel, stomach, skin and more. I am a redhead from Norway and Sweden and apparently sensitivity was required for our survival many thousands of years ago… and my body today is a reflection of that. It was never, ever my fault and nor is it yours.
I refuse to carry any shame about my health. I no longer feel guilty or unworthy. The very best part of my job here at the ICN is when I get to remind you that you shouldn’t carry the burden of blame and shame either. It’s so important that every IC/BPS patient remember that we didn’t ask for this. We didn’t invite IC into our homes or our lives. It can hit suddenly, quickly, randomly and shake us to the core. But I hope that you always remember that you are not to blame nor are you being punished.
We are each so much more than IC/BPS. We are mothers, fathers, sisters, brothers, friends, lovers. We are good neighbors. We have compassion for others. We want to work. In fact, I bet we work harder than most other employees. We are survivors.
One of my favorite quotes is “There is nothing so moving, not even acts of love or hate, as the discovery that one is not alone.” I hope that the ICN can give you the confidence to hold your head high with family members and friends, to walk into any doctors office prepared to speak about your health and your needs. You, my friends, are not alone in your struggle for health. We walk beside you!
If you are struggling with self doubt or building back your self confidence, I’d love to help! Send me an email to: firstname.lastname@example.org. I’d love to hear your stories, tips, struggles and strength! – Jill Osborne, ICN Founder