"What's True is What Our Patients Tell Us"

The Judgement of Others

• "Patients who suffer from chronic pain also suffer from the judgement of people who call them names. Pain patients have suffered the moral judgement of those who treat them. It is scary that those who suffer are also judged by those who should be treating them."

• "The worst thing I ever heard a doctor say to a patient is 'there is no hope.' There is always hope. There may not be a cure, but there can always be healing. Chronic pain can always be healed."

• "The bible says 'No ill shall befall the righteous.' Do some believe that because you are ill, maybe you aren't righteous?? That's a terrible burden for a patient to bear... that you might not be good because you are ill. Everyone faces illness at some in point, but does that mean that they aren't righteous?.

• "I come from Memphis, a very spiritual city. We are connecting to God and sources of hope and strength. I'm a cancer specialist. Twenty years ago, we discovered that pain in cancer patients stops them from healing. It stops them from living. Living is our (the doctors) business. Sometimes the pain of cancer deprives them of living their lives and we found that if we give them pain meds, they heal. They get better. They connect. They get hopeful. That's our job on this earth. If you leave people in pain that is untreated, they lose hope and that's the worst thing that you can do. We want to restore their lives and their hope."

• "Some physicians feel they can't use pain medications. They're afraid of them, afraid of causing and addiction. But at the same time, they love their patients. They hate to see them suffer. They're torn. It's an awkward position."

The Pain of IC

• "The pain of IC is totally different than the pain you feel with a normal bladder. And when you say that your bladder hurts, they won't understand. To them, a sore bladder is something that happens at a football game when they have to go the bathroom.. and the line is too long.. but they really have to go. So.. they go have a few more beers, watch the game .. and then their bladder is uncomfortable. It's not the same physical experience or pain sensation as an IC patient."

• "The first time I heard of IC was in medical school twenty years ago," offered Dr. Brookoff. "A famous professor was lecturing. At the end of his speech he said 'Oh.. there's this disease called Interstitial Cystitis. It's little old ladies and they have to urinate alot. They're always in pain and they will drive you nuts. It's a psychiatric disease.. it's all in their heads and don't ever give them pain meds. If you do, they'll want more.' and someone asked.. 'well.. what do you for them?' And the Dr. responded 'You run some tests and then, eventually, remove their bladders.' And then another student asked 'But, if it's all in their heads, why remove their bladders?" Doctors were trained that IC patients would drive them nuts.

• Biochemistry is the truth to doctors. If it has a biochemical explanation, it must be true. Yet, we know that it's just a model and it will change. What we learned in medical school is outdated in five years. What's true is what our patients tell us.

• When the caregiver tells the patient he's bad.. that's the worst thing we can do. Who are they serving when they accuse you of being an addict.. or that it's your fault that you are suffering? There is hope, strength and healing for everyone. Don't let anyone separate you from your hope and strength. Anyone who tries to is not on the right side.
• Find people who will help you restore your life. Find the treatments that will help you restore your life. Life is good. We can heal the pain. We have medicines that work.