Disclosing Your Route Of Transmission

Daryl's great article on disclosing your status inspired me to write about this topic.

Anytime I've ever told anyone I had hepatitis C, I get that look. You know the one: “Well, how did you get it?”. Some have asked the question with more than a look. Many come right out and ask. Although I have always told it to them straight when asked, I used to advise others that ignorance was perfectly acceptable. The answer, “I don't know”, isn't so far-fetched. But this was at a time when common routes of transmission hadn't yet been firmly established. Are regular folks now more educated about hep C? Sometimes I think, yes, but who knows?

"So, how'd you get it?

I once told an anesthesiologist I knew exactly how I contracted the disease. He replied, “Oh, yeah? What was her name?” Even doctors who aren't specifically trained in HCV can appear like this goofball. On the one hand, HCV awareness is crucial to getting as many treated as possible. On the other, claiming ignorance about how we were infected can lead to suspicion.

I've always opted for shock value. I tend to look people right in the eye and say, “When I was a teenager, I shot up heroin. Lots of other drugs too”. They know I'm a Baby Boomer and so I lived during a time when drug experimentation was rampant. Occasionally, someone will ask, “You...don't still...uh...?”.

The role of the opioid epidemic

“Shoot heroin? Every day. Can't start my morning without that fix – and a cup of coffee, although, I could probably quit the coffee.” Well, they usually figure out I'm joking. But yes, there is stigma. Maybe it's part of getting older – but I'm 62 now, and I don't care much about stigma. I don't really mind watching how people's faces contort when I blurt out the truth. But that's me.

This kind of frankness isn't for everyone. But sometimes – maybe it's the company I keep – others confess to a dalliance with syringes in their youth. It's not as uncommon as one might think, and these days, IV drug use is exploding – and not on the streets, either. Even in wealthy suburbs, heroin is making a big comeback. The cost: co-infection with HIV and HCV. That makes my own story a cautionary tale. It often begins with prescription opioids – the “Oxy” drugs. "Hillbilly Heroin." When doctors indiscriminately stop prescribing these drugs, withdrawal is inevitable. When a script is cut back, folks crush the drugs they have and snort them. When they are withdrawn, patients panic, and the search for their favorite prescriptions move to the streets. They soon find out that they'll pay upwards of $300 to replace their monthly oxy supply, and heroin, the ultimate opiate, is ten bucks a pop.

There has to be a middle ground – a responsible way for doctors to help folks ease off prescription drugs. They're the ones who created the addiction to begin with. Rehabilitation is the key. These drugs are highly addictive. I know. I take them. My pain management doc has me on a combination of oxycontin, oxycodone, and Lyrica. I've been taking them safely for years. I'm under a written, signed contract. I'm required to give a sample of blood, urine, or saliva every appointment. My doctor and I have a long relationship of trust. Even still, she refuses to write opiates for any new patient. It's my age, life expectancy, and the seriousness of my injuries that call for mercy, and I have never broken faith with her – no marijuana, and no self-increase in dosage allowed.

Stigma, addiction, and honesty

And yes, the stigma remains. When my pain doctor moved her office 45 minutes away, I started looking for a closer doctor. No one in her former office would write me, even though I'd been a patient there for years. I tried my orthopedist. No luck. He said, “With your history of drug abuse, I can't write opioids for you".

History? I haven't used IV drugs since I was 18. Sometimes stigma is the price for honesty. The guy actually thought I'd go junkie on him? Being more judicious might be a good thing.

So now, when I self-disclose my route of transmission, I feel like I never know who I might be talking to – maybe someone struggling with addiction. By blurting out the truth, it might give me the opportunity to really help someone. But that's me. Thank you, Daryl.