How I Dealt With Chronic Pain That Wouldn't Go Away
Blogger and weight loss memoirist Jennette Fulda wasn’t sure what was going on when she started getting headaches, only that eventually she had to come to terms with the fact that her headache wasn’t going away. Unluckily for her, but luckily for us, the result of her ongoing quest for pain relief is her memoir Chocolate & Vicodin: My Quest for Relief From the Headache That Wouldn’t Go Away (Gallery Books). She details everything she did to try to cure her headache, to the tune of $10,000, trouble at work, and umpteen suggestions from well-meaning readers, with only minimal results. The 30-year-old web designer talked to us about humor as a coping mechanism, dealing with inept doctors, what to say (and not to say) to a chronic pain sufferer, and who’d play her headache in a movie.
Rachel Kramer Bussel: What was your experience with headaches prior to the time period you cover in Chocolate & Vicodin?
Jennette Fulda: When I was a kid I occasionally got headaches if I was dehydrated or stressed out. Then when I was twenty-one I got a headache when I was driving three hours to visit a friend. I got detoured because of a chemical spill on the highway, got lost, got found, and got pulled over by a cop for speeding. That headache lasted for a month, but when I finally made myself visit the doctor she gave me a beta-blocker that made it go away. I took that pill every night for six years. I tried to go off of it twice, with my doctor's supervision, but when I did the headache came back. Then when I was 27 the meds stopped working and I've had a headache ever since, 24 hours a day, 7 days a week, 365 days a year. (And because I got the headache during a leap year, that was 366 days that year.)
How far into your headache journey did you get the idea for the memoir?
It was when a nurse came to my home to insert an IV in my arm so I could give myself a home IV treatment every day that week. I couldn't believe they were trusting me with this. It was insane. I could have injected anything into that thing! Or infected myself with bacteria from my kitchen table! So I decided I had to blog about it, but the blog entry got really long. That's when I thought it might be a book, but at that point the book didn't have an ending or even that much of a middle since that scene happens around page 60.
There’s a lot of humor in the book, even when you’re discussing very challenging times when you were pretty much unable to do much besides lie on the couch. Does humor come naturally to you and, especially relating to the headache, was it a coping mechanism?
Several people have asked me this, and I've thought about it a lot. I've come to the conclusion that I have no idea where my sense of humor comes from. It's just part of who I am. My family likes to joke around a lot and when we have an extended family reunion sometimes all the laughing makes pets flee the room. So it might come from that. Regardless, humor definitely helped me deal with the headache because if I wasn't laughing I'd be crying. And crying is bad for the headache. It makes me feel all stuffy.
You talk about chronic pain in the book and I must admit that I’ve never through about that in terms of headaches. How do headaches fit in with the world of chronic pain sufferers?
Headaches are sometimes trivialized because people think, "Oh, it's just a headache. Everyone gets those. Just take an Excedrin." A constant headache becomes part of your consciousness because it's located in the same place where you see out into the world. It's like an extra sense I use to process my environment, like sight, smell, or taste. I could imagine a life without a leg or an arm, but I can't imagine a life without my head. In that way the pain is part of an indispensable, essential part of me. Headaches are also most common in women, so like other primarily female diseases in a historically male-dominated field they weren't always taken seriously, and sometimes still aren't today. There are now many more women in the health industry, and research has shown that migraine disease and other headache disorders are real diseases that deserve serious attention, but there's still room for improvement.
On your site you have a PDF entitled “5 Tips for Talking to Chronic Pain Sufferers,” and in the book, often how people spoke to you or dealt with you, especially when they were dismissive or clearly clueless, seemed as arduous at times as the physical pain. What are the biggest mistakes both the medical establishment and laypeople have made when talking to you about your headache?
I think the biggest mistake is that people talk more than they listen. More specifically, people like to talk about themselves and their experiences with pain more than they like to listen to someone else's experiences. When people give me advice about treatments, it's usually a roundabout way to talk about themselves or something a friend of theirs experienced. I still think they mean well, and in their defense all you really can share with someone is your own experiences, but try not to make it about you. Focus on the sick person instead.
As for doctors, I've read that it only takes 18-23 seconds before a doctor will interrupt a patient. (http://patients.about.com/od/therightdoctorforyou/a/docpatientcomm.htm) It's easy for doctors to form an opinion too quickly, especially because they're so pressed for time. When doctors mentioned my "headaches" it always annoyed me because I don't have multiple headaches, just one that never goes away. It made me feel like they didn't really understand what was going on, and if they couldn't grasp such a basic premise of my condition how could they help me? When I went to a specialized headache clinic a year into my headache, I spent an entire hour with a nurse just going over my headache history. I had never gotten that much time and attention at any other doctor's office, ever. I really appreciated it. So I guess the lesson is to talk less, listen more.
You also say that more than advice or something that is meant to be helpful but often isn’t, what chronic pain patients want is to feel validated and listened to. I can tell you that when I read that my instinct to want to help felt extremely thwarted. Is there anything more people can do?
Have you ever been stuck in traffic and complained about it to someone on your cell phone? Would you prefer they say, "Well, you really need to leave the office earlier and not take the interstate," or "That sucks, dear." Most people would choose the latter. That's how it is for chronic pain sufferers, too. When you're in the middle of something, you don't want someone critiquing the choices you've made. You just want them to give you a hug. So, there's your answer. Give hugs. Lots of them.
What advice would you give to other headache sufferers? Were any of the treatments you spent $10,000 on, even though they didn’t cure your headache, worth their price?
It's important to keep trying new treatments. It can be really disheartening when you try dozen of things and none of them work, but eventually you might find something that brings down your pain if not cure it. So keep at it, even if it's exhausting, soul-crushing, tedious, never-ending work (and paperwork). It's okay to take a few weeks off between new things if you're really exhausted, but keep an open mind and try to find what works for your life. As for money, thankfully my insurance covered a lot of the bills, if not as many as I wish they had. I'd say all of the treatments I tried were worth trying. The important part was figuring out when to give up on a treatment that wasn't working and to quit spending any more money on it. Everything I tried was worth the money I spent, but at some point it was also worth not spending any more money on it.
There are times when you talk about your headache as if it were a living entity, so I have to ask, who would play your headache in the movie version of your life?
Oh man, probably someone who really grates on me like Tom Green, Pauly Shore, or Adam Carolla. Funny that I chose all men. I didn't do that on purpose!
The question I’m sure all readers want to know: how are you feeling now?
I'm doing pretty good. Through a combination of medication and lifestyle changes I'm able to keep the pain down to a 1 or 2 out of 5 on most days. However, it still flares up if I get really stressed out, dehydrated, or if I wake up earlier than normal. That's my most common headache trigger, but at least I have a medically sound reason to sleep in.
Chocolate & Vicodin is available in bookstores now. Find out more at chocolateandvicodin.com..