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.
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