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Jennette Fulda: Communicate and Get Your Needs Met

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Better communication strategies ensure you’ll get your needs met

An interview with Jenni Grover and Jennette Fulda about learning better communication skills. Jennette Fulda is a writer, web designer, chronic headache sufferer, weight-loss inspiration, blogger, and former governor of the fourth grade. She lives in Chapel Hill, North Carolina.

In 2008 Jennette got a headache that still hasn't gone away. She wrote about her ordeal in a humorous headache memoir called Chocolate and Vicodin: My Quest for Relief from the Headache that Wouldn’t Go Away.

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Jennette also tells the Internet stories about her life on her blog, develops WordPress web sites, and inspires me to find more joy whenever I feel cruddy.

Jenni: Hi, this is Jenni Grover from ChronicBabe.com and we are at Lesson 9 on communication. If you have made it this far, I’m so proud of you! There’s still so much left to learn, so today we are talking with friend and writer Jennette Fulda.

Jennette’s a writer, web designer, and chronic headache sufferer, and you’ve probably heard of her book Chocolate and Vicodin: My Quest for Relief from the Headache that Wouldn’t Go Away. It’s got the cutest book cover and it’s such a great story—I mean, I don’t have chronic headaches and I loved reading the book. I think anybody with chronic illness and chronic pain could benefit from reading it. Jennette’s so relatable! We’re going to talk today about communication techniques. If you want to check out anything else about Jennette, she’s got all kinds of stuff at her website JennetteFulda.com. So, welcome Jennette, thanks for being here today.

Jennette: Thanks for having me.

Jenni: I always like to have fellow ChronicBabes in the mix here because you know from experience what it’s like to deal with all the stuff that we deal with, just like our listeners.

Jennette: I think the people who face it every day really understand us.

Jenni: I totally agree—there’s nothing like being in the trenches with us. But we’ll party with it, I don’t want to be so negative! (laughter)

Today we’re going to talk about communication techniques because I think it’s something that, for all of us who thrive as ChronicBabes, I don’t want to say mastered but we’ve really worked on. So I’m wondering, just for starters, if I could hear a list. Can you name all the ways you communicate with people about your health? All the mediums you use?

Jennette: I think one of the first things I used was my blog, because at the time I was running a blog and I got this headache. I remember the exact day, it was February 17, 2008, I got this headache and it wouldn’t go away. I tried to avoid writing this for the first few months because I didn’t know what was going on, but then it became such a huge part of my life; I felt like I needed to write about it or else I was keeping this huge secret.

So then it really felt good pouring my soul out and telling people what was going on. The good thing is, I got a lot of support and a lot of good comments. The bad thing, though, is people start to send you lots and lots of cures and you get this list of, literally, over a hundred things—I’ve collected a list over the years and it’s just like how could I possibly do all these things, I’d still be working my way through everything, so you kind of have to pick and choose the ones that you really think might work for you.

So, the blog is one way. I also visited a lot of online forums. I didn’t necessarily post a lot though; I tended to just read what was there and use that as leads to maybe investigate other things or to figure out what headache clinics might be good for me.

I also have actually met a few people on Twitter, where we sometimes have Twitter chats or we’ll hashtag things, or maybe someone who has read my book contacts me. I have also shared a lot of emails between people who have read my blog who perhaps have chronic headaches themselves and have been doing web searches and said, “I have had this condition” and asking me “what have you tried?” and “What has worked for you?” We’ll kind of have a back-and-forth talking about our own problems.

That’s actually really great, because those people really understand what you are going through and some of them maybe are farther down the line than where I am and they have come to more of a point of acceptance and coping. And some of them are actually people who have just started. They are at “what should I do?” and “What can I try?” and “How can I get rid of this thing?” You kind of get both viewpoints on that.

Then I also talk to some people in person, either because maybe I had a book signing or something like that, or when I was doing promotions for my book I got to meet a couple of bloggers; we talked on the phone about meeting in person to blog about chronic headaches or chronic conditions and they, too, can really relate to what you go through even if they don’t have chronic headaches. When dealing with chronic illness, you have to learn a lot of the same techniques, like how to communicate with people and how to deal with your condition.

Jenni: Yeah, and then in terms of talking about your health, for example, with friends and family, and healthcare providers. I’m guessing you also use the phone?

Jennette: Yes, I think most of the conversations I have are in-person at appointments, with healthcare providers. I have used the phone for refilling my prescriptions or phoning the nurse, that you can contact or leave a voicemail message with if you have a question, something that is non-urgent, not something that needs to be taken care of right away; they usually call you back.

I haven’t ever emailed any healthcare providers, even though I would like to. Usually the problem is they have to comply with HIPPA to maintain privacy—they have to remain private, so your doctor can’t just set up an email account and have you send stuff to them. They have to be sure that the emails can’t be intercepted and that only the person that is authorized to read it, reads it.

Jenni: I had a really interesting conversation with Dr. Val in Lesson 7 on relationships. She’s an MD, and we talked a lot about emailing doctors and she mentioned that most, the vast majority, of healthcare providers don’t get paid for the time they are on email, so it’s really challenging for them. Even beyond the HIPPA stuff, which is really challenging and they have to be to be super-careful. They don’t get paid for any of that time and she stressed that, “it’s not that we don’t want to take care of you, because we do, we care, but we also have to make a living and if we spent all day emailing our patients, we wouldn’t get paid anything.”

She also talked about how doctors might put something in an email and patients can sue them for that, and there are all kinds of legal ramifications for diagnosing—they are not supposed to diagnose over an email. There are a lot of things I wasn’t even aware of about emailing my doctor. I do email with my doctor, so wow, he’s brave!

Jennette: Actually I have a friend who is a radiologist and I’ve emailed her informally about some of my scans. I was able to get my MRIs and CT scans on CD, where you can actually open them up and view them on the computer. She took a look at them for me and she said “this is where you have the weird veins and all that stuff,” but she never interpreted and told me what certain things were. She’s not my doctor; she’s my friend who’s a radiologist. She’s not telling me in a professional capacity.

Jenni: You’re not going to sue her if she didn’t say the right thing.

Jennette: Right! One nice thing with this technology is my neurologist is able to prescribe medications through the computer. He is able to send the prescription through to CVS Pharmacy and they get it, so I don’t have to bring in a slip or anything. Which is convenient and handy.

Jenni: Yeah, I’ve been loving that. My doctor has been doing that too and he can even send them to the mail order prescription pharmacy that my insurance company requires me to use. It just saves so much time and hassle and then everything is really well-documented. Now, my slightly messy file of stuff, which I’m working on getting it tidied up—like a good ChronicBabe should—but it’s so much easier to just have it digitally, because I’m digitizing all my medical records right now.

Jennette: Some of my doctors use laptops for everything, and my most recent neurologist has everything on a laptop and he’s able to scroll through and look at previous medications we’ve tried and find out how I’ve rated my pain at different appointments and run through all the information right in front of him. Sometimes, maybe some of my older doctors who are not necessarily adapting are not taking on the new technology, so it will be interesting to see how long it takes the doctors to really get the digital formats.

Jenni: It does seem like it would improve the way we communicate with them, in-person with doctor appointments also; if they have all that stuff they can show us so quickly, like you said, and do statistical analysis too. When you’re reporting certain pain levels or have symptoms they can track over time, I think that’s fantastic. Is your neurologist—I know you probably have a primary care physician—but do you see your neurologist more often? Is that kind of your main one?

Jennette: Yes. The first year or two I had the headaches I saw a lot of different doctors. I started with my primary care physician and got referred to a lot of other people, and I also tried Eastern medicines, like acupuncture, deep-muscle massage, and that kind of stuff. And of course now my pain is lower than it was, is now maintained at that level. It would be good just to get rid of the headache before a hard day’s work wears it out, but I’m coping and doing OK.

I’m still seeing doctors, but not as actively as I did at first. So I just see the neurologist every three months or so. At this point, we are just altering the dosages of my medications, and things like some steroid injections around my head and neck to see if that would help, but I didn’t get any results from that. So I see him pretty regularly—I see him more than my regular doctor.

Jenni: So, in terms of when you are communicating with him, what kind of techniques do you use? What’s your primary mode of communication and what do you think has wound up working well for you?

Jennette: They actually have a standard questionnaire I fill out every time I go there and it asks: How much better/worse do you feel since you first came here? Since the last appointment? And it asks me things like: How often has your headache prevented you from doing things like work or activities like that? How many times has your headache made you frustrated?

That helps him track things over time to see if they are getting better or worse. That’s one of the best ways to communicate with him. And sometimes it’s hard to bring things up if you are embarrassed—I needed to talk to him about birth control because I wanted to know how would going on birth control affect my headaches, since it affects your hormonal levels and such, but I was a little bit embarrassed to ask him about that stuff. But you do it because you need to. You just kind of get over it.

Jenni: Yeah, you’ve got to figure they hear every kind of weird thing all the time, so your request for birth control is probably so low on the scale of stuff he hears all the time. I know it’s hard; I’ve struggled with the same thing. Every year I go to the gynecologist to get my annual checkup. Now I’ve had the same doctor for a few years and he comes in and spends a lot of time with me. He asks me how I am, he asks how my boyfriend is, how’s your work, how’s your family, all that kind of stuff. He’s great.

He really is a great communicator and that makes it easier for me than, say… well, I’m not going to say all the things I say to him, I’m not going to reenact an appointment now! (laughter) But it makes it easier for me to ask him questions that are more delicate in nature, that I maybe would only ask my sisters or my best friend about, because he’s a doctor and he’s there to take good care of me. Those are the kind of questions that I could not email him; I want to see him there in person. There’s a body language thing and I want him to see how serious I take things.

Jennette: It’s good to have a good rapport with your doctor, someone who knows who you are—literally. Someone who would notice if there’s something off or if you are more stressed out than normal, don’t look as healthy or if you gained weight or lost weight, that might be related to some sort of medical condition.

I moved recently. I lived in Indianapolis for about 10 years and had a really good relationship with my doctor there. So the bad thing about moving is I had to get a whole new set of doctors.

I got a recommendation from my old headache clinic for the new place and I’ve been really happy there, but it’s kind of hard—you have to start from scratch, you have to go and form a relationship.  My doctor, the neurologist in the office is less-talkative than my old one, but I think I have had better results actually with the latest one, which is strange. I don’t know what accounts for that other than maybe he just lucked out and got the right medications or what? It’s kind of interesting.

That’s one of the things with moving, it was kind of a big thing—something I really had to consider. “OK, I’m going to have to find a new neurologist!”

Jenni: It’s so tough when people move. I’ve stayed in Chicago for a really long time, so I feel really lucky. If I have to move I’d be very nervous about that aspect of it.

We’ve talked a lot about healthcare providers. Thinking more now on a personal side, when you’re not feeling well, how do you communicate that to people you know personally? Like your friends? I don’t know if you have family in town or what but…

Jennette: Yeah, I have a brother and sister-in-law in town and actually, one of the headache clinics in town that I went to did a scale of one-to-five for your headache, and a lot of places make you keep a headache diary and you have to record it either when you have a headache—or with me, I had to record it in the morning, afternoon and evening, like what number I was and look for patterns. Sometimes right before your period your headache will be worse because of the hormone changes; sometimes it can be weather, something you’ve eaten, so you keep track of it on that one-to-five scale.

I’ve educated my family and my friends on the scale, so when they ask me “How are you doing?” I say “Well, I’m on a number three right now,” they understand where I am pain-wise. If I’m like a four, they know, and if it’s a two they know it’s not as bad.  So, having that language really helps. I prefer the one-to-five although the one to ten is actually more common, but I like the one-to-five because there is definitely a distinct difference between each number. Whereas if you do the one-to-ten, you’re like a seven, but there isn’t much difference with a number eight or too much different from a six.

Jenni: Yeah, I have trouble with that a lot and what’s interesting is I’ve read some research about this and a lot of pain clinics, and my pain clinic where I go and get treatment and see my pain psychologist every week (I also see my doctor every couple months for check-ups and my physical therapist is there), they use the one-to-ten scale and sometimes I’m like “well, last night I was at a six, but maybe it was a seven, I don’t know, but for a few minutes there I think I was at an eight, I really wanted to throw something through the window.”

How do you know? I remember one day I went in for PT—this was one of my past physical therapists—and he was so funny. He said “You look like you are going to kill someone!” and I said, “Yea, my pain is so insane today, it’s not a 10, it’s more than a 10!”

We are both fans of spinal tap and he said, “You turned that pain up to 11!” and I started laughing so hard. I was like “Yes, its an 11! Not on the scale, dude! The scale is meaningless to me right now, all I can tell you is I can’t function.” It’s difficult; it’s cool when you can find someone you can like and relate to.

Jennette: And there’s a difference between pain and suffering. Pain is an irreversible level of whatever is going on in your head, that kind of static state. Suffering is more the way you perceive it. Some people at circuses can lie down on a bed of nails. And they will say they’re not in pain. I think somehow you are able to access parts of your brain where you are able to turn it off or not pay attention to it, and I kind of think they are like zen monks. They have this way to do something that even though they are in pain, they are not suffering from it. They are able to do something mentally, but I don’t know who wants to go out and be a zen monk!

Jenni: It’s really not practical!

Jennette: One of my coping techniques is to try to not think about the pain, and actually it helps me not be in so much pain.

Jenni: I’ve definitely used distraction and visualizations and all kinds of stuff to learn how to block it.

Jennette: And that’s kind of counter to the idea of communication when you communicate about your pain, your headaches—sometimes you don’t want to communicate with it, you don’t want to think about it, but you to have to go into it and be there with it.

Jenni: I’ve learned over the years (and it’s a hard lesson to learn,) but I’ve learned there are times when I can be in a lot of pain and, for example, a friend would say to me “How are you doing?” and I may say “You know what? I’m in a lot of pain, but let’s just not think about it.”

And people who are close to me get that. If I say that to them, they know I’m really struggling but I want to be distracted and think about and do other things and that helps me, but I think over the years I’ve needed to learn how to say to people, “Hey, if I say this to you, this is what I mean.” I’ve been explicit with people; I think that’s one thing I’ve learned. I struggled with it in the beginning, to just be very explicit with people.

Jennette: I think in the beginning you are just holding on to your old reality. You don’t want this thing to stop you from doing all the stuff you used to, but when you kind of accept the new normal you are able to say “I really can’t go out to a club until three in the morning anymore.” I just need to tell people that and deal with that.

Jenni: So, I’m wondering: I hear a lot of people talk about not feeling well and they really come off as whiners; I know I might catch a lot of flak for saying that, but heck, I’ve been a whiner myself. I’m wondering if you have a favorite thing to say to people that lets them know? It sounds like you’ve got the pain scale thing worked out, but do you have anything else you ever say to people so they know you’re in pain but not like “Aaawwweee, I’m reeaaallyyy hurttttingg…..”

Jennette: I think it really is a challenge. I think it’s easier with people who really know you because they understand more what you go through. To be honest, I probably don’t complain about my pain as much as I should in other situations because I don’t want to be a whiner. I don’t know that I’ve really found a way to say things without looking like I’m weak; you don’t want to be the weak person at work, the person that can’t keep up with things.

Jenni: In some cases, it’s just people’s perceptions. Some people you could say the most mild thing and people would perceive you as being a huge whiner, and that’s on them because you can’t change the baggage they bring to the situation.

Jennette: Yeah, I think it’s more other people’s problem. If you say it calmly and don’t use that “AAAaaaaa…” tone of voice, I think there’s only so much you can do so people can understand what you are going through.

Jenni: I used to know a woman who had fibromyalgia and she would—I actually wrote about her once on ChronicBabe, a story called Embrace the Whine, if anybody wants to go read it.

When we would be together, she would just moan, constantly. She would be like “mmmaaaa…..” We’d be hanging out, we’d be riding in a car and she would be like “mmmaaa…..” and I’d say “hey, are you OK?” and she’d say “No, I’m fine, I’m fine” “mmmaaa…..” and I thought “you know what, it’s OK, you don’t feel good, that’s OK, but the whining and moaning is really working my last nerve.” I think that’s the way not to do it!

One of the things I’ve found is when I ask for what I need and I’m clear with my communication, I almost always get it—and I think that’s great. I think part of that is the relationships I’ve built with people in my life. When it comes to work that can be challenging, I know you are a freelancer like I am, so you probably have lots of different clients and maybe you don’t have to meet some of them in person ever. But maybe you have work situations and you must have to sometimes communicate about your health with some, do you?

Jennette: Yeah, if there’s been a week where I haven’t been able to get things done because I have to go lie down, or working in front of the computer really isn’t the best thing for a headache. You need to make sure you are in an ergonomic position; you are not putting a strain on your neck because if you aggravate nerves in your neck it can cause your headache to be worse. You also have to make sure you don’t have glare on your computer, and all these various things. I also need to get up regularly for breaks, which I do not do as much as I should.

So basically, there are times when I really can’t work. Usually my clients are OK. It’s kind of good to know who has deadlines that are very firm and they have to get done, while other people are more flexible, and it’s OK as long as you get it done in the next few weeks, it’s fine. So you have to re-order your priorities, so it’s less likely you have to let someone down.

There have been times I’ve emailed people and said “I’m sorry, I will probably get this done this week, but my headaches have been kind of bad and…” Or I’ll not even say that; I’ll just say I’m not feeling well, because they may not necessarily know about my headache story and I don’t feel the need to go into my huge long tale of woe, you know what I mean? I’ll just be like “I’m not feeling well.”

Jenni: Really? You mean you don’t want to tell your whole medical history to every person you meet?

Jennette: That’s why I’ve written a book. I’ll just point to it and say, “Here, I’ve written a book!”

Jenni: Read this primer…

I know what you mean. With my clients and different work situations, most people know—the vast majority knows I have chronic illness. Some of them get it, some of them don’t, and I agree with you: keep track of priorities and be really clear. What I’ve found is that, it’s an extremely rare, very rare client that’s fussy about it; I just can’t work with them again.

Jennette: Yes, you can fire your clients. That’s important to remember—fire them.

Jenni: Definitely. I know some people who are listening are in an office job. They may not have that option, but can choose to not talk about health stuff to a certain co-worker who is really thoughtless. Hopefully they have a supervisor who understands it, or someone who does in HR or whatever, someone who can get their needs met.

I think that’s important. Also: using good boundaries to shield yourself from those co-workers. Like we talked about in Lesson 4, to not necessarily go into the whole spiel or song and dance because some people are just not going to get it. Maybe you don’t really want it to be about that, you don’t want to be “headache girl”. I don’t want to be “fibromyalgia girl.” We want to be professional.

Jennette: I was working full-time for a media company when I got my headache and had only been there for about a month; I really did become “headache girl.” It was kind of strange for me to have that be so much of my identity. Actually, it was pretty good. My boss there got migraines a few times a year, so he was really sympathetic to my condition. They did everything to make my workstation ergonomic and stuff like that.

Jenni: That’s pretty great! I know when we’re sick (and you and I work for ourselves, which is even more of a challenge, I think), sometimes when we’re not feeling well, being isolated is really challenging. If I have a flare-up and I’m on the couch in my apartment, I can go a couple of days without seeing another human being and that is not healthy. How do you stay in touch with the people who nurture you and help you stay positive when you’re feeling your worst?

Jennette: I have to say one of the best things about writing a book about my condition is I get a lot of reader mail. I get the greatest emails, too. They are from people who have a chronic condition, not necessarily headache, but some people do have chronic headaches and they say stuff like “this book finally explains what I’m feeling and I was able to give it to my friends or my family to really explain what’s like to deal with this issue.”

And you just get a lot of emails from people who are going through the same thing, and you can kind of support each other, and really can understand what they are going through. As for socializing with people, I usually go to coffee shops to do my work, just so I’m out, among the people.

Jenni: Great strategy!

Jennette: This type of getting out is really good. Even if you aren’t talking about your headache, it’s good to be out among people and doing regular things. You’re not just sitting in the bed, in the dark or whatever, even though that can be hard.

Jenni: Sometimes when I have my worst kind of flare-up, and I really feel like I’m stuck in the house, I will text my sisters or friends just to say, “hey, I am a mess over here,” and they’ll text me a joke or they’ll call me and we’ll chat for a few minutes, or on the rare occasion, I’ve had people bring me food or come hang out with me.

Because maybe I can’t get out, but I can sit on the couch with a friend and watch a movie and I don’t feel I am alone with illness. But I have to reach out to make that connection because we’re all really busy. My best friend has a son who is in preschool, and people are busy and have big lives so I know they’re not just going to be checking on me all the time and going “hey are you OK, how are you doing?” It’s up to me to say to people “hey, I’m a mess, I need a little TLC over here.”

Jennette: Yeah, I find that Twitter and Facebook are good for me because those are the places people go to check in on their friends and find out what’s going on with other people. So if you put out a message saying, “I really feel like crap today,” someone will comment or ask, “how are you doing?” It’s those little things that really do help.

Jenni: Twitter has been great for me with that. I try not to do too much because I really don’t want to be that person who’s tweeting everyday about their health. I’ve got to say—I love you, but I won’t follow you if you do that, because it’s a bummer.

Jennette: You don’t want to wallow in it.

Jenni: You can really wallow in it and then you are—and I don’t mean to go back to whining—but you are kind of being a whiner. I don’t want to reject the idea, and I’m saying this from experience. Anyone who is getting annoyed with me talking about people being whiners, I am speaking from experience. I have been called a whiner by people when it was inappropriate; I totally know how much that sucks and I’m certainly not saying everyone who talks about their pain is a whiner. But I think there are ways to communicate that you need support that are really healthy and are going to result in more support.

If you are that person who is tweeting every day, posting on Facebook every single day “I feel like crap today, I feel like crap today…” People get fatigued with that and I think they stop responding.

Jennette: I get sick of feeling bad all the time, and they can get to a point where they get sick of hearing how you feel bad all the time.

Jenni: Right! If I did that I’d be so bummed out! I’ve actually had moments when I’ve tweeted things like “Argh…. I feel like crap!” And I will actually apologize to my followers: “I’m sorry, I kind of dumped on you. Here’s a picture of a teddy bear.” Or “here’s a picture of a kitten” or “here’s a dirty joke,” just to say “I’m sorry, I totally polluted your Twitter feed with whining, here is my recipe for bacon chocolate chip cookies” or whatever. Maybe I shouldn’t feel bad about it, but I do sometimes.

Well, we’ve talked about a lot of different communication styles, relationships, how we talk to people about how we feel when we need help and stuff like that. Before we go, I was wondering if you have any favorite communication tips for sick folks that we haven’t touched on? I know we’ve covered a lot of ground. Do you think maybe there is something we haven’t talked about that you want to throw in?

Jennette: I think a general tip is, the most common way you give up power is when you believe you don’t have any, and I think you just have to remember that you have the power to ask for the what you need to make things happen, to help you. So remember you have the power to communicate and you can reach out to people for what you need to take care of yourself.

Jenni: A perfect summary to what we have been talking about, I love it. Jennette, you’re the bomb, thanks for talking with us today.

Jennette: It was fun talking with you.

Jenni: If you joined us late, this has been a conversation with Jennette Fulda. She’s a writer, web designer, and chronic headache sufferer, and she’s the author of the book, I really love: Chocolate and Vicodin: My Quest for Relief from the Headache that Wouldn’t go Away. It’s a great story for people who have chronic daily headaches, or migraines, or for people who don’t. I don’t and I read it and loved it. I got so much out of it. It’s just great to relate to someone else who’s kind of going through something similar to me, has great advice and great practical situations for you to learn from. You can learn more about Jennette at her website, jennettefulda.com.

This has been Lesson 9 on communication, so next up, our last lesson! Just one more on Tips, Tricks, Tools and Systems. We’re going to be talking to somebody really cool. Thanks for being with us today and until the next time, be as well as possible! Bye!

Jennifer E Grover