OFFICIAL LIVEBLOG - Identity/Passions: PatientBloggers - You Are Not Your Disease, You Just Blog About It Every Day
Session Description: Chronic or acute disease can change your life overnight…and make you feel as though you’ve lost control of your own body. PatientBloggers find support, information and resources, and regain a sense of control via their blogging. But are there also down sides? Privacy concerns abound. Being identified as just a person with a disease can feel confining. And what if you’re cured or in remission? Where does your blogging (and more importantly: that close-knit, supportive community you've developed) go from there? Share your own stories with us, and find out how to manage it all from Loolwa Khazzoom, who, despite enduring chronic pain, has used dance to help herself and others find joy, Kerri Morrone Sparling, who has successfully battled Type 1 Diabetes since she was six, Jenni Prokopy, who writes about life with Fibromyalgia, Raynaud's Phenonmenon and GERD, and Casey from Moosh in Indy, who has written about infertility and depression. Mr Lady, who has written about mental illness and working through depression, moderates this discussion.
The session began with Mr. Lady of whiskeyinmysippycup.com/, Jenni Prokopy of chronicbabe.com, Casey of Mooshinindy.com, Kerri Sparling of www.sixuntilme.com, and Loolwa Khazzoom of www.dancingwithpain.com introducing themselves.
Mr. Lady asked people not to use flash photography during the panel. She read her introduction with her biographical information and assured us that she is not crazy.
Loolwa introduced herself. She runs Dancing with Pain, where she talks about living with and healing from chronic pain.
Jenni Prokopy runs chronicbabe.com and has numerous chronic illnesses. She speaks particularly to young women who are living with illness.
Casey at Moosh in Indy discusses depression and infertility at her blog mooshinindy.com.
Mr. Lady asked for a show of hands, how many people write about health and patient issues on their blogs.
Jennifer of toastontheceiling said that beginning last February she had chronic fatigue and migraines that would last week. Because it relates to her kids she started to write about it on her mommyblog.
Melissa multitaskingmama found the internet when she was diagnosed with MS in 2008. She blogs about her life and her illness, and has met many women with "invisible illnesses."
Lori notjustaboutcancer started blogging when she was diagnosed with breast cancer that spread to her liver. Her liver was riddled with tumors, but by June she was in remission, and has been for 2 years. Not Done Yet is her book and it's available here at BlogHer.
Elizabeth Martin of Thepartyplanningprofessor.com got really sick and had to sell her party planning business. She was bedridden and started celebratethesilverlining.com to get through it. She was given a terminal diagnoses but it was incorrect, which got a big PHEW from the audience.
Katie at overflowingbrain.com had brain surgery 18 months ago because her skull is too small for her brain. The surgery didn't work and there's nothing that can be done for her. Her husband is a doctor, so she talks about health care from both sides and how to figure out how to live in spite of her problem.
After the introductions, Mr. Lady said we'd talk about the pros and cons of blogging, disclosure, and the transformation of patient blogs over time.
Anyone who has blogged about health knows that there are great things and lousy things about it, according to Mr. Lady. Jenni Prokopy said that at age 25 she was diagnosed with a bunch of different illnesses. For a few years she was unsure of what to do and all the sites she found were too highly medical or too depressing. So she made her own site - chronicbabe.com.
Before she launched they had hundreds of hits per day. She saw that people really need this information. She realized quickly that she'd need to write more, because the readers really needed it. She felt responsible to her readers. She tells how to live as a total babe, even though you're sick. The whole point is to be who you are, she said. The downside was having to write all the time. The upside was receiving positive e-mails from readers.
Jenni has to combat defining herself by her illness. She meets people who don't understand that she's sick. People don't believe in fibromyalgia. She decided not to define herself by her illness. She's a writer, a community leader, and a wife.
The downside of patient blogging is that you put yourself out there, and no matter how positive she is, she still feels really crummy. Sometimes she is writing something positive when she feels really crappy, and that feels sort of inauthentic sometimes. She feels like her readers really want and need her to be positive. Sometimes being positive forces her to feel better.
An audience member said that putting pressure on yourself is unnecessary. As a reader she says it's ok to say, "I've had a rough couple of days." Then they could connect on that level, too.
Jenni is also in a forum on Ning where she complains more, and people really react to that.
Diana Lee writes about chronic migraines and depression at somebodyhealme.dianalee.net. Asked if they could talk about the idea of having an identity outside of her illness. She feels like her illness has taken over her identity. She wanted a family, she was an attorney, and now she can't have either of those things. She feels closed off.
Jenni replied by saying, "I totally understand where you're coming from." Once people know you're sick you get a lot of "awww..." and that's the last thing she wants. She wants people to keep lifting her up. A big part of her coming back to her identity was to fall back on her support network of friends.
Jenni said that when she's whining her husband says, "Wah!" People see it and think he's a jerk, but she loves it because it cracks her up. It helps her come back to Jenni, and not be "the sick person."
Kerri said her tagline speaks to that issue. Diabetes doesn't define her. It's important to remember the whole, even when a part of who you are sucks that day.
Loolwa was criticized as a child, but it ended up being a gift that she's all over the place - she's an Iraqi American Jew and has always been self-employed. Her chronic pain started with a car accident. She moved to Isreal and became a journalist. Her whole life is freelance, and it works for her. She's built a life where she can be in bed for a week. She schedules her life around what she can and can't do so she can always promote her health and take care of herself.
She's turning her negatives into a positive. Dancing with Pain is about her healing journey, and documenting it. She does fall into the pit and write "my life sucks," and when she writes it she feels better. She thinks it's positive to turn her illness into a brand and become powerful because of it.
Jenni gains self-worth from knowing that she's helping people. She has always believed in service to her community and gets value from doing so. She was e-mailed and someone said not to use the word "chronic" because it defines her by her illness, and said her website should just be "babe." But she took a negative thing and flipped it by turning it into a blog.
Sarah Beckley is a chronic illness coach. Mentioned that newly diagnosed people are having a really hard time and it's easy to stay in a dark place. That's when you need to reach out to friends and family and work on your identity. Once you have a treatment plan you can stabilize and rebuild and focus on your identity more. She has three different heart conditions, all of which could kill her. She's had a stroke and a brain hemmorage, and she loves helping people, but there are days when she can't get out of bed. She's working on developing passive income in preparation for the day when she can't work.
Jenni's house was hit by a tornado a few years ago and she went into a major depression as a result of the damage. There were weeks when she couldn't work, and it really took its toll. Having Chronic Babe helped lift her back up again because people were sending her messages and support.
Jenni said that the upside is that she has an awesome community that lifts her up all the time.
Kerri said that just because you write about your illness doesn't mean that you're awesome at managing your illness. Everyone's having bad days.
Casey said that another great thing about blogging is sharing the ugly times. There are always those inspirational books about overcoming, everyone has a story that has a happy ending, and that doesn't happen to her, so those stories don't help. Through blogging we're able to share that it is just ugly and it sucks sometimes, and that's ok.
An audience member said that people think they're being helpful by saying things, and that it helps having a community to get support in those situations.
Casey said that as a patient blogger we can help educate the healthy on what's ok and not ok to say.
Mr. Lady steered us into Casey's story. You can see Casey's uterus at her blog. She's going to talk about feeling like you've put yourself out there too much, and what to do about it.
Ree of My Life as a Hotfessional took off her wig so Mr. Lady would make out with her. Her body doesn't make hair because her white cells attack her hair cells. She has no other symptoms. She doesn't speak well with her husband about what's going on inside of her. She wrote a post about what it's like to be bald. Her husband read it (for the first time, after 2 years of blogging) and cried and said, "Why did you keep this all inside of you?" She wants people to keep in mind that the way you react mentally to your life with your illness is your own business, but putting it out there, you will get the support you want. It will do wonderous things for you.
Someone seriously should've brought Kleenex to this thing. We're all crying now.
Mr. Lady writes a mommyblog where her health comes up eventually. She won't tell what pill she takes. Lots of women/mothers want to know what it is. She doesn't want to be the doctor and give that info to her audience.
Kerri, on the other hand, will tell you everything. She's going to talk about disclosure.
When Kerri first started blogging she didn't know about disclosure. She started blogging 4 years ago at age 25. When she was little she went to diabetes camp, but no one in her town had it. She wanted to find other people like her. So, she used her full name. Four years later she's still blogging about her diagnosis. It became an issue when she started looking for a job, but she was hired because she writes about diabetes. If she's ever in a situation to be seeking employment again, though, who knows?
When Kerri reads other information it doesn't necessarily speak to her questions. She's very specific about her treatment regimen because she teaches diabetics how to LIVE with an illness. The companies that make the devices and treatments can't necessarily speak to how to LIVE with those things.
An audience member talked about her article on how to have sex while wearing a heart monitor under her own name. Kerri wrote about how to have sex with a pump (ha ha). Everyone in her real life, including her previous and current partners, read that article and it caused a little stuff. So, she changed it to a pseudonym.
Another audience member (nomatterhowsmall) talks about infertility and pregnancy loss. One of the things the fertility community has done, via Stirrup Queens, has published a whole set of videos on how to inject yourself without pain and bruising. Half the time the stuff shown by the nurse is the worst way to do it. The non-blog medical information is dry and not really that informative. She also blogs about ADD and talks about which foods cause the meds to work poorly. She'd love it if companies would read the patient experiences more.
Kerri gets email from pharma companies. They want to be engaged, she thinks, but they can't do it publicly.
That same audience member wrote about talking ADD meds while pregnant. A Canadian organization publishes accurate info on what's safe while pregnant. Now a drug company is linking to her blog. She thinks it's weird that they haven't contacted her. Also, fertility doctors and nurses reading their blogs is uncomfortable. She only identifies health providers by name if she's going to sue them.
Casey's doctor reads her blog and thinks she's hysterical.
Jenni's providers read her site, and they give her cards out to other patients. Your blogging is part of you as a whole person.
Mr. Lady asked if we could go over the time limit, then asked the audience member if she's ever afraid someone's going to take her medical advice and die. Everyone yelled "Disclaimer!"
Casey had hyperemesis throughout her first pregnancy and lost 60 pounds during her pregnancy. She tried to commit suicide when she was 7 months pregnant. Women e-mail her asking what she took, and she refuses to tell, because she and her daughter both came out in one piece. She says that if you're not doing well, people need to listen.
Jenni doesn't talk about her specific meds because of the concern that someone will follow her advice and get sick or hurt. One of her Twitter followers started asking her about suicide after seeing a photo of a scar from a surgery. So, she blocked that user. She feels for her, but she can't take care of her. Blogger's responsibilities are not to take care of readers, but they're not responsible for them.
Kerri said it's important to put a big fat "I am not a doctor" disclaimer on every post that could possibly be construed as medical advice. Tell readers, "you shouldn't listen to me to fix you!"
Loolwa thinks that doctors are idiots. Her whole orientation is that she learned how to take care of and heal herself. She doesn't specifically tell people not to go to a doctor, she just tells her own story and her own experience. To her, writing is her conversation with God or the Universe. It's how she thinks and processes what's going on. She doesn't care what other people do with the info on her blog, it's for her. She isn't on a mission to tell anyone what to do or not do.
Dancing with Pain, though, is a company and she's done workshops with people who have chronic pain. She feels she knows more than medical doctors, and should be able to call herself Dr. Khazzoom. Most medical schools don't even have one class or workshop on chronic pain. She feels that she's an expert on chronic pain.
Unmommas.com agreed. She's a mommy/personal blogger, but started her blog from a medical institution. She's divulged every detail of her many illnesses (depression, infertility) and she has NEVER had backlash and has only gotten positive feedback. She feels that it helps hold the medical community accountable when we share our experiences.
Another audience member feels a responsibility to share her experiences because she's been there and back with chronic migraines and she's tried all the medications out there.
Jenni has a post on her site about the sexual side effects of Celexa where someone learned that her side effect was caused by her Celexa on an episode of Weeds!
Another audience member wondered, with regard to SEO (party planning professor). Some of the searches that come to her scare her to death. Her number one hit is "I hate my life." Casey's is "how to kill yourself while pregnant." Casey has called Australia because of an e-mail she got that scared her. She called the authorities in Australia to tell them the IP address and that she was afraid the writer would hurt herself.
Transformations of the blogs is the next subject. Loolwa gave her background. In 1997 she was in a car accident. Prior to that she was extremely physically active and it was a big part of her identity. The medical non-response to her pain, being dismissed as a hypochondriac, is what really changed her. It was years of hell, a maze of no one caring that her life was going to hell. Doctors injured her, doctors didn't help her, and her condition was furthered. Her spine froze and she could barely walk and doctors still didn't respond. 4 years ago she was contemplating suicide every day, as a routine. She thought it would all just get worse.
She had a mystical transformation experience in the desert in Israel. She started dancing with her arms. She was at a dance retreat, and she ended up tearing up the floor four days later, when she couldn't walk a few days before. She realized the power of dance in that experience and started healing herself with dance.
At that time she was a freelance writer and after her wrists were injured she was fired. She was a writer who couldn't write. She shelled out thousands for voice activated software and got laryngitis from talking so much.
She wanted to position herself as a blogger who writes for magazines, then the article draws health care providers, the media, advertisers, and then she can position herself as a very powerful patient.
Doctors saw her as the crazy, bitching patient (which is common with chornic pain) but by positioning herself as an authority, she could send the link, introduce herself as a journalist, impress them, and be treated with respect because they saw her as a whole, smart, accomplished person - not a name on a chart.
She also blogs to motivate and inspire herself. She wakes up every morning barely able to move and hating life. She wanted to put herself in a position where she couldn't wallow in it. She uses it to pull herself up. When she started blogging she started getting up and dancing.
Her story was one of repeated traumas. She thinks the medical profession created her condition. She needed to tell her story.
She still had fear in telling her story. She thinks there's a toxic ideaology in the alternative/new age medical movement, so that when you talk about what's wrong with the medical establishment people think you're bringing it on yourself, which adds another layer of trauma.
Another fear Loolwa had was that a lot of people see things in black and white. If she can't get out of bed one day, are they going to say "why should I turn to her?" because she had one bad day out of seven.
Loolwa said that she was in a place where she didn't know what to do and she didn't blog for a while because she was stuck. She was talking with some people who she was considering working with, and a woman she'd never met said, "You have this incredible, unique voice... What you offer is really different and really speaks to people." She encouraged Loolwa not to hide. Mr. Lady's excitement about Loolwa's story, and being invited to be on the panel validated her story and she stopped feeling afraid. She got her "eff you" attitude back, and now she's blogging again regularly and she feels like the flack can be written about, now.
Casey started a blog to update her family on the dumb stuff after a move cross country, and then she sat down and decided to write about her overdose, and she did. She then realized that she could write about depression, and she started to. She got an e-mail last year that said, "Seeing you dancing at BlogHer gives me hope that someday I can dance again." And she's here this year, and they danced last night.
Now she's in a place where they want to put her on a shot that's $2000 each. She has a card for someone at the White House, now, and has a direct line to someone to talk about how to help people like her with the health care plan. And she just found out that her insurance is going to cover her shots. It's been a big day!
Talking about it is powerful. Really powerful. And she just started blogging to talk about her kid.
Mr. Lady wrote a momblog as well, with no depth, and then her friend Jim was doing a leap of faith meme. After 30 years of denial she started taking antidepressants because of that internet meme. Then she wrote about it. It changed her blog, and now she writes differently as a result.
Jenni feels like the posts that are the most personal and raw are the ones that get the most attention, because that's when she's being authentic. She tries to put as much of herself in there as she can.
Time ran out at this point, but the discussion continued informally afterwards.