In our latest episode we talked to Peter Grinspoon, a Harvard doctor who struggled with painkiller addiction, about the dangers of drug abuse. He says drugs – other than marijuana – are evil. Our listener Jen O’Neal strongly disagrees.
O’Neal, a 23-year-old college student in Austin, Texas, has Ehlers-Danlos syndrome, which affects connective tissues between bones, skin and vessels. She's been struggling to manage her pain since she was 6 years-old, and says she has a four-page medical history including a heart problem, hip preservation surgery, gastrointestinal problems and chronic fatigue. O'Neal believes the system that causes drug addiction also stigmatizes people who need painkillers to go about their daily lives.
Here's our conversation.
Only Human: What kind of painkillers do you use regularly?
Jen O'Neal: Last night, out of nowhere, my pain spiked so high that I couldn’t walk from my living room to the bathroom without help. I took an oxycodone so that I could get myself to bed, so I could stop the pain from creeping higher. Through pain management I have tried opioid (fentanyl, oxycodone) and non-opioid medication (Lyrica, Cymbalta, meloxicam). A good day for me is a 3 or 4 on the pain scale. An average day sets me at 5 or 6. I stop functioning well at around 7. As I write this I’m at a 6.
OH: Do you use any other remedies to manage your pain?
JO: I do everything you’re “supposed” to do with chronic pain and fatigue. I eat healthy, avoid alcohol and caffeine. I walk my dog every day and do tai chi twice a week (I just got my gold sash). I use a TENS machine, [which stimulates nerves]. I’ve tried massage and acupuncture but they are both very expensive (insurance doesn’t cover them) and they’re minimally effective. I have gone to therapy and continue to go semi-regularly. I try and meditate. I can’t do yoga because that’s bad for my joints. I take baths with epsom salts. I try and keep my stress down. I take every vitamin I’m told I’m supposed to take. I don’t know what else I can do.
OH: What kind of stigma and discrimination have you faced since becoming a regular user of painkillers?
JO: I walk with a cane sometimes and sometimes I don’t. I notice a shift in attitudes towards me based on how much my disability is showing – if I walk up to a pharmacist without my cane I get a lot more questions and a lot more “side eye”. I feel like I’m treated based on how sick I look. I’ve often had to convince doctors to get disability accommodations. I have to prove again and again that I am sick. I feel like my body and health is made very public – other people feel like my body is a public discussion. Just the system I go about getting them – it’s set-up to treat me as someone who already has an addiction. Guilty until proven innocent, if that makes sense.
OH: Has this stigma ever gotten in the way of you seeking help from a doctor?
JO: There was one time, after a surgery, I experienced anxiety. I was starting to wean myself off the painkillers but I was really scared of pain. I became really anxious – and I was afraid if I expressed that they would cut those drugs off. So I didn’t call any health professional other than my therapist [who doesn’t prescribe the medications]. I think that’s really disconcerting. I don’t have any power in the situation between me and my doctor.
Especially with chronic pain, when it’s not obvious – they think you’re faking it. There’s a lot of discussion around chronic pain being “all in your head”. There are doctors who are really understanding for people like me, but a lot of it has to do with legislation.
OH: What does the media and public get wrong about painkiller abuse and addiction?
JO: There’s an epidemic where people are dying from overdoses. And I think those people are victims of the same systemic issue I am. I think stories around the epidemic – they’re super-vilifying and in this case the villain is the drug. People are saying these drugs are evil, they should be banned.
There’s this idea that people who take opioids just f----ng love them. Do you know how constipated they make you? My sex drive is super low, and I’m an engaged woman. Right now I’m going to school, I need to get home to walk my dog and make dinner. I don’t want to be high. Opioids are not the best thing, they’re just the best we have right now.
Read more about opioids, stigma and regulations on Jen's blog.