I’m over the moon to have had the chance to interview the very wonderful Pattie Brynn. In the fall of 2010 she was Diagnosed with Systemic Lupus Erthematosus (SLE). She was soon thereafter diagnosed with a variety of other illnesses. Blogging can be a very powerful tool and in her case, she used it wisely to her advantage. Take a moment to read her interview here and then a few more moments exploring her inspirational blog LupusInterrupted.com.
TBN – Why did you first decide to create a blog around your Chronic Illness?
Pattie Brynn: About six months after my initial Lupus diagnosis, I realized that this was going to be a complex and “scientifiky” kind of journey, so I thought that perhaps it would be best to create a place for my family and friends to simply “click” and one-stop-shop for all the in-the-know they could ever want…
…and they didn’t read it. Two years later…my dad doesn’t realize the severity of my issues and most of my extended family (cousins, aunt, uncles…) don’t even know what it is that I have. Buggernackles.
…and my some of my friends of good health and “normalcy” didn’t care. At all. Double buggernackles.
Reality kind of ninja-kicked me upside the head with a very invaluable lesson: They don’t have to. Who is reading it, then? Those who need it, of course. I hit an entirely different target market than I’d originally sought and the blog has evolved from a kind of “memo” to one of sharing information, knowledge and resources.
TBN – How has blogging helped you with your struggles with your illness(es)?
Pattie Brynn: I like the (es) in parenthesis. Once you have an autoimmune disease, it’s like the other diseases get all jealous and want to come out and play. I’ve received three other diagnoses of syndromes and/or diseases since… and that’s on top of the Type 2 diabetes I’d already had since being clinically diagnosed after the Great 2-for-1 Special (delivery of twins) of 2007.
By blogging, I’ve realized that I’ve hit a vein of people who appreciate the wit, sarcasm and humour that I can inject into writing about things that we’ve all been taught: “If you don’t have anything nice to say…” to not talk about it. I write it real, raw and even use language that is more becoming of a sailor or an old-school mechanic. Y’know what? That’s the reality. There ain’t no purple painted ponies pooping butterflies jacked up on SugarSmacks in the world of autoimmune disease. It sucks ass. A lot. And, I can share that in a very therapeutic forum: People read it AND they *get it*. It gives validation to the struggles I endure when someone messages me with sentiments such as, “You put into words what I think every day….”
If I can validate even one person in the chronically afflicted community…my transparency of writing makes enduring what I do all that more justified.
TBN – What are some hidden truths that you have brought to light through your blog about your illness, or illness in general?
Hidden truth #1: You know more chronically afflicted people than you think.
According to the Public Health Agency of Canada: “In Canada, three out of five Canadians older than 20 years of age have a chronic disease and four out of five people are at risk.” Three out of five. Pick your five closest friends. Yup. [PHAC, September 19, 2011, Canada Signs UN Declaration on Preventing and Controlling Chronic Diseases]
Hidden truth #2: We are literally hidden…I refer to “invisible illness” because people can’t always see that you’re sick.
Sometimes? Even when you are really, really sick. I’m certain that’s why awareness bands, t-shirts, soaps-on-a-rope exist: How else are people going to “see” you?? I’ve deduced that with all the syndromes and diseases I have, I could wear an awareness t-shirt for 9 days before needing to do laundry. *ponders*
Hidden truth #3: You really do need to own your shit.
I think what makes my writings so applicable to other people’s journeys is that I can write about the nitty gritty…the evil hounds-of-hell pain…the awesome *happyspazzydance* of good times…because I am the ONLY person who can control what I do with my disease(s). I can blame my mother, my circumstances or, hell, even my fourth grade teacher…but only I can hold accountability for my health.
I quit smoking. *fistpumps* I got off my ass and have been going to the gym for weight training and cardio. I’ve researched nutrition changes I recently made for myself. I’m studying a Chartered Herbalism program because I want to find complimentary therapies other than taking anti-malarials, anti-epileptics and the like. I don’t Whine-1-1.
TBN – What inspired you to start the amazing movement “The #gladitude project!“?
Pattie Brynn: Precisely because of theWhine-1-1.
Call the Whaaaaaaaaaaaambulance!
I’ve left more forums and groups in the past two years that I belong to currently. Why? Venting is awesome. Doing something to help you is even more awesome. Complaining incessantly is akin to going to the dentist. Or, nails down a chalkboard. Whichever.
In a community where people continually meme “…but my illness doesn’t have ME….” …there are many who enable themselves with this secondary illness called, “The Eeyore Sndrome.” True story.
Ergo, I felt the need to create a concept by which people could relate to in order to find something positive in an otherwise often dreary journey. It’s not purple painted ponies. It’s not “gratitude”, which is something that relates to the bigger concepts (like family, spouses, home, etc) that we all cherish no matter what.
No, when things get bad (and they can, indeed, get really, really bad…) I make a choice: Do I wallow in the dangerous cyclical vortex of depression, or do I find even ONE small thing that I’m going to be glad I saw/noticed/heard/witnessed? It’s a hard habit to break, wallowing. It’s much more comfy and takes much less work. BUT: If people are going to continue to permit me the balance of writing about good days and bad days…I simply cannot afford to NOT choose to find focus on the “little things.” By sharing our small finds…we encourage and inspire others to do the same. It’s an attitude. And you can be badass. Win-Win.
Bonus? This works for chronically afflicted AND our able-bodied, healthy communities.
TBN – You talk a lot about healthcare in your blog. In one post, you talk about Canadian Healthcare in particular. What is the one thing you would love to change about Canadian healthcare and why?
Pattie Brynn: I really do strive to associate my “brand” with Canada, because I feel there is an extreme lack of information for those with chronic conditions in this country. I’m also an avid hockey fan and love me some poutine.
What I would absolutely LOVE to change? COMMUNICATION via electronic media.
Today’s technology can put a robot on Mars going all Etch-A-Sketch…but we don’t have an application or software system and/or bureaucracy that would allow a GP to have access to a Rheumatologist’s file who could access an Endocrinologist’s file…like its own medical Wella Balsam commercial. Oh, I realize your primary care physician gets a “report.” Weeks later. That a clerk shoves into your file. That they’ll read the day they see you, taking up precious minutes of examination time. (o.O)
With many people turning to alternative therapies using holistic approaches, herbalism, etc…it would also be a matter of safety to ensure that communication between health care professionals is at its best.
TBN – You get very personal in one of your posts, about invisible illness. Many will choose to not be so open. Why do you think that is?
Pattie Brynn: Stigma.
Ask how many chronically afflicted people have been called “lazy” by family and/or friends. Ask how many have been dropped as friends because they can no longer commit to events and social engagements.
Sometimes I don’t want people to think I’m weak, helpless…broken. I can’t explain why have an autoimmune disease…thus, I can’t “prove” one way or another that it “wasn’t my fault.”
Some even wonder, “If nothing will change to the chaos of my reality…why bother saying anything at all?”
This is where I feel that my job, as an advocate, is meant to step in to say to everyone, “Hey, get this: I, and other people you know, have this mo-fo autoimmune disease and it sucks bollocks. Here’s what I have to endure. Watch me try to kick its ass, k? Right after I get up from being curled in a fetal position from a quasi-breakdown. I’m on it.”
TBN – Continuing with the above question; Has opening up and blogging/talking about your “invisible illness” helped you and if so, how has it helped you.
Pattie Brynn: I crave the validation that comes from people’s comments. It encourages me when I’m having a less-than-stellar day. It reminds me that I *am* speaking for other people who cannot find the right words. By helping people in such a way…I feel useful. I feel a sense of purpose. I feel that being kicked to the curb by so many health snafu’s and having to redefine my entire view of “normalcy” is, in fact, not quite the tragedy that the initial diagnoses seemed at the time.
TBN – You blog a lot about art and the healing that can come from it. What do you believe makes art such a powerful tool when dealing with illness?
Pattie Brynn: Total. Escapism. (and the retail therapy for supplies doesn’t hurt…just sayin’…)
Trend seems to allude to: “One of the keys to health and well-being is to be able to meditate.” Okay, well, not as a quote, really, but there is a lot of information about how meditation can help you reset yourself. Now, I love meditation. What I lack, however, is the capacity to do it. *shifty eyes* For me, it’s aggravatingly boring.
Boring, however, only according to my socially acceptable definition of “meditation.” I’ve learned that art, as with music, IS my form of meditation. I can zone out for however long I’m able. I’m in complete bliss to all things chronic or younglings or husband or…LIFE. My space. Me, me, me time.
Colour + Design + supplies(to the power of bling) = total mental-health reboot.
What pains me (…see what I did there?) is when I hear of folks who have lost the ability to do what they loved due to pain and other physical limitations. Dancing, knitting, painting, playing guitar, etc. What do you do? I gently encourage people to find and try something new. Me? I’m going to hurt whether I’m sitting on the couch or applying Mod Podge to an altered mixed media album. *shrug* I choose the latter. That’s the epitome of “Healing Through Art.”
TBN – Do you find your blog helps you with the emotional toll that comes from dealing simultaneously with illness and being a mother?
Pattie Brynn: I’m not entirely sure I’d make it to the final chapter of the-book-I-really-want-to-write without this blog. I think what happens is that people tend to focus on *MY* challenges and lose sight of the fact that it’s a whole family journey. Part of that journey is dealing with poop in the floor vents. True story. (o.O)
My children need a functioning mother. I need a healthcare plan to help me function. Where the blog fits in, is right smack in the middle of my made-for-tv-movie kind’o’life and what happens to create a balance in order to make that a reality.
It’s also my little “I’m so sorry I f*cked up parts of your life” to my kids. A written record of the things I wanted to do with them, but couldn’t, because even brushing my teeth was a huge accomplishment for the day, or how I had to crawl up the stairs, because my joints hurt too badly to bend. Some people even call me a “Super Hero.” I’m not so sure about that…I don’t know if Superheroes chug mocha-valium-lattes…but what happens is that when readers comment about how I am a hero to them…well…my children are going to read that one day. Can you imagine any cooler of a way to be perceived by your children?! Makes me leak fluid from my ocular orbs. True story.
My blog is my outlet to release the chaos of my reality. The fact that people can extricate something beneficial (knowledge, information and/or resources) into their own journey is the icing on the cake. I can’t eat the damn cake, thanks diabetes, but I can pass it to my children. I just need a theme song.
TBN – If you can give one piece of advice for those suffering with invisible illness, what would it be?
Pattie Brynn: I’ve written and re-written this section four times now…each time with a different concept. This is a hard one! Sometimes it’s just as simple as telling someone:
“ Do the best that you can with what you’ve been given…but for the love of all things…DO!”