Sunday, November 6, 2011

Just Because I Have The Same Disease As You That Doesn't Mean I Like You—But That's OK

I enjoy playing mahjong. When I was a kid, I was a fan of Oregon Trail on the Apple IIe, but mahjong held my interest game after game. Sometimes I planned my moves. Sometimes I just tried to see how fast I could match tiles. I always liked that mahjong was a game that I could play by myself.

Only children like myself are used to doing things alone and often prefer it that way. Indeed there is an element of control that we relish. Doing things alone involves no compromise, no sharing, and complete autonomy in rigidly staying the course or wildly abandoning plans to do something else entirely. An only child left to her own devices may go from building elaborate Lego houses one moment to playing dress up the next to building Lego houses in dress up clothes because there is no one to please other than herself. The only child grows into an adult who may well prefer to work alone, stubbornly refusing to delegate lest a project be done differently than imagined. The only child may turn down help because she has learned that no one else can be depended upon. The only child is therefore self-reliant to a fault. 

Chronic patients mimic much of an only child's behavior. The chronic patient is used to no one understanding how she feels. The chronic patient may withdraw because it is easier to be alone than to try to keep up with everyone else. The chronic patient operates on a schedule much her own so as to move with the ebb and flow of her health, one day hosting a dinner party and the next day never leaving the bed. 

The chronic patient who is an only child is a creature who is both fiercely independent and profoundly lonely. I am that creature, and my loneliness is further compounded by the fact that I have a rare version of a rare disease. There's a saying often used in the medical field that if something looks like a horse, and walks like a horse, and sounds like a horse, it's probably not a zebra. As an only child who is a chronic patient with a rare version of a rare disease, I can't help but imagine myself as a sullen green unicorn sitting in the corner who no one will play with because even though I could be really nice and awesome, sullen green unicorns are just weird. Even zebras think so. 

That's the problem with diseases, rare or otherwise. Simply because one shares a diagnosis with another person, that doesn't mean the two will get along. Every patient who has cancer doesn't like every other patient who has cancer. Every patient who has lupus doesn't like every other patient who has lupus. Every patient who has psoriasis doesn't like every other patient who has psoriasis. Patients must have the ability to pick and choose their disease friends the same way they pick and chose their regular friends. Attempting to pigeon hole patients into disease specific groups may actually fragment the disease population more so than allowing patients to form their own unique sub-groups. Imagine "Libertarian Breast Cancer Survivors Who Love to Knit" or "Rheumatoid Arthritis Sufferers Who Enjoy Baking and Bowling." There might be only five group members across the entire nation, but the level of connectedness that those five members would feel among one another would be tremendous. Support need not even be disease specific. That may mean that a sullen green unicorn, a zebra, a couple of otters, and a cheetah all decide to hang out together. There have been stranger friendships. So long as the motley crew can support one another in the way one another needs, the group serves its function. 

I've had the pleasure of getting to know several fellow chronic patients via social media and my relationships with these patients are based on who we are as people. There's @HurtBlogger who has arthritis and with whom I shared late night tweets about headaches. There's @joltdude who has diabetes and with whom I've tackled patient care and end-of-life issues. These are people about whom I've come to care. There's @katherinekleon who experienced spontaneous coronary artery dissection and with whom I've talked about patient-driven research and who, when she learned of my upcoming surgery, wished me "a soft cotton hospital gown with a pretty print that wraps ALL around." That's what I call true patient support. 

As the health care industry continues on its quest for true Medicine 2.0, those who are organizing patient support groups would be well advised to remember that above all else, patients are people. If patients can not get the support they need from people they like, from people they trust, then patients will grow to feel even more alone, embittered and embattled, like sullen green unicorns wishing to hell that the rest of the animal kingdom would ask them to play. 

12 comments:

  1. Uuugghh...I just poured my heart into a comment that disappeared!!!! If I can get this to work I'll be back with a second comment. In the mean time...great post.

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  2. Well, I can't quite get my earlier thoughts back. But I am grateful to bloggers like you for what you put out there. Living in a small town, estranged from work because of illness (and therefore cut off from a lot of my local real life support) I need that. It's all still new and scary to me still on the social media front, but I'm so glad its here.

    YOU are the kind of blogger who HELPS PEOPLE COPE with chronic illness.

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  3. Oh no! I hate it when that happens. Thank you for reading, and your heart pours are always welcome.

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  4. I love this whole post, but the line that resonated is:

    "Attempting to pigeon hole patients into disease specific groups may actually fragment the disease population more so than allowing patients to form their own unique sub-groups."

    That's where I see some very interesting opportunities as we go forward into an age when most people have access to the internet, a lot of people have access to social networking tools, and a growing number of people see the value in congregating/communicating through those tools with other people like themselves.

    In the early days of online patient networks, it was extraordinary to connect with someone who shared ONE of your conditions -- and lots of one-condition sites sprang up and flourished.

    Now, more people are online and more services are available to help people connect on multiple levels/conditions -- an opportunity for layered-condition sites (note: just made that term up). Diabetes AND a heart condition, for example.

    And of course the Green Unicorns probably graze at all these different, disparate sites and services, hoping to catch a glimpse of another unicorn, maybe even another green one.

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  5. Good morning & Happy Thanksgiving, I just saw your blog post roll across my Facebook news & it grabbed my attention at "hello". You have a refreshing point of view about chronic illness & the way it leaves a unique thumbprint on each of us dealing with it. I can relate to your pearls of wisdom. I started & stopped several sharing blogs & a Facebook group support page when I was first diagnosed with autoimmune hepatitis (AIH) back in 2009. But, for whatever reason, perhaps related to your insights, they were not working out. My latest blog is working better because it's not solely focused on providing AIH support. It's main purpose is to share my collection of AIH medical resources in a open blog format. But, the flipside is that I have a good little support group from my followers who leave comments and posts about their unique AIH journeys, too. I hope you'll drop by & leave a comment, sometime, too. There are many overlayers between the chronically ill, particularly with autoimmune disorders.
    Namaste,
    Mags
    http://askmeaboutaih.wordpress.com/2011/11/23/treating-pediatric-autoimmune-hepatitis-aih-the-stanford-school-of-medicine/

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  6. I, too, can associate with your posting. I have gastroparesis and chronic pain. My husband actually found a support group on line but it took me several weeks to actually get on there and see for myself. Now I post my journal entry or start a conversation, or just post a reply to someone having a difficult time.
    I believe if I hadn't found Inspire.com I would not be here right not! They had answers to questions that my doctors didn't. They've been there done that.
    Family doesn't understand that this is going nowhere it's lifetime. I will deal with this illness and pain for whatever may remain of my life, perhaps worse.
    They see you and say, you look good. Not that they see you very often or even talk to you. Your life centers on, will I be able to go outside today or do I need to curl into that little ball of pain and hide by myself.
    Right now dealing with insurance rejections of procedures that could possibly make my life easier, control the pain, allow my stomach to empty a bit faster, get me off pain meds....
    So, yes, I am a green and yellow unicorn who is often ignored and sometimes glad of the fact that I don't have to deal and smile and pretend I'm dealing fine, thank you.
    Margaret

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  7. I can absolutely relate to your post. But I have to say that if I hadn't searched for other people who have Fibromyalgia on Twitter, I would not have met so MANY wonderful people. Including @hurtblogger :)

    People who really understand what it's like to live with chronic pain. I also believe that had I not found this Live 24/7 amazing support group I'd have gone quietly batsh*t mad :)

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  8. Blue Unicorn with purple dots here, but most know me by my other name Paul. I have Huntington's Disease, a rare, genetic disorder in which one's nervous system breaks down over time. I also belong to several online groups, but my favorite is made up of those with HD or affected by HD who are artists, including wordsmiths. Its here in the tiny subgroup where I feel at home among my own.

    I got a lot of out of this blog entry, and want to thank you for putting it in writing.

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  9. I just love that green unicorn! To me, he(?) represents everything I have learned from other patients I've met through social media.

    Getting to know others helps us better know ourselves, whether in understanding a new perspective on health care, life, or even realizing that hey, maybe it isn't just heart disease ruling my world; perhaps my immune system is whack as well!

    Regardless of diagnosis, we all benefit from coming together.

    Congrats again on Doctors 2.0 and thanks for letting us share your journey!
    K

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  11. Beautiful. So raw. So true. Caroline

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  12. I really enjoyed this post and your likening having a chronic illness to being an only child was something I had never thought of before. I can certainly relate to your comments about people with a similar diagnosis not always getting along. I feel like I have a very different outlook than many of my Marfan diagnosed counterparts (at least the ones I have come across) and it does feel lonely at times. It is almost like that sense of community is missing, but fortunately I have found it in other places :)

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"We are what we think. All that we are arises with our thoughts. With our thoughts, we make the world." — Buddha