How Life with Rheumatoid Arthritis is Challenging
I got hijacked last week. Not by pirates with cutlasses, eye patches, bad teeth and a shoulder-perched parrot squawking obscenities. Instead, my week was hijacked by something much more bureaucratic: an agency deciding I needed to devote days to doing enough paperwork that I suspect they'll need to build an extension to their offices to store it all.
We like to believe we have free will. We like to believe our lives are our own. But the reality of living with a chronic illness like rheumatoid arthritis is this: you can have a plan for your week, you can have deadlines, an infestation of meetings, family obligations, plans to weed the garden and decorate your living room, but one phone call can cancel everything. Whether it's insurance companies deciding you need to fill out 57 forms in quintuplicate, a supplier claiming you can't get a particular medication (despite having a prescription and approval from your insurance company), the never-ending trip down the rabbit hole that is the application process for SSD, staying on top or your doctor(s) to make sure tests are ordered, referrals made and results communicated, juggling the administrative and bureaucratic requirements to get the meds, equipment and services you need (and are entitled to) can be a full-time job -- an unpredictable full-time job. Just when you sit back on the couch, utterly exhausted, but pleased that you've done everything you needed to do and now it is their turn, they'll find some hiccup or obscure requirement that sucks up another four days of your life.
I often joke that you need an advanced degree in case management to handle life with a chronic disease or disability. More than once, I've thought of making up a fancy diploma for it, issued by the School of Life. At minimum, you learn to become an organizational genius, capable of Olympic-level multitasking and more knowledgeable about the labyrinth of bureaucracy than the employees of whatever agency or company you're dealing with. And sometimes, it's hard not to get frustrated because these people get paid to do these things and you don't. But if you leave things to the "professionals," you're the one who ends up paying for it with long delays, wasted time in doctors' offices, apoplectic blood pressure and having to do it all yourself in the end anyway.
There's a new term being bandied about in the health information field and, as usual, I don't like it. That term is Expert Patient and like Patient Identity (about which I ranted here), it reduces people with a chronic illness to nothing but the illness. We work hard to be more than our disease, work hard to be real people, only being patients in our doctor's office, but here they go again, the healthy, slapping on a convenient label that negates any empowerment we may have achieved.
But here's the thing... you don't have to live very long with RA to become an expert patient of sorts. You very quickly discover that for the sake of your own sanity and survival, you'd better educate yourself, not just about your disease, but about The System, because if you don't, your life will not only be hijacked temporarily, but will be sucked into the maw of the beast, like a sacrifice to the gods of bureaucracy. Your only chance of having a normal life in between coordinating applications, referrals and phone calls is to take control, to know your rights and the resources in your community, to create files stuffed with information, names of people who are helpful, names of people who aren't, write letters to the higher-ups and to politicians and before you know it, you've become an expert. A highly trained professional, capable of organizing a vast army of social workers, doctors, physical and occupational therapists, insurance reps and miscellaneous public representatives. And instead of cannons and swords, you defend your territory, your life, with your phone, your computer and your time. At least with pirates, you'd have the adventures of the high seas and the possibility of some day getting a parrot yourself.
So I wonder what term we would choose, those of us who live with the disease, because I'm pretty sure that although we're all experts, the term Expert Patient might make you wince, too. Personally, I'm rather fond of Sensei, the Japanese title which, according to Wikipedia, is "used to show respect to someone who has achieved a certain level of mastery in an art form or some other skill."
What name would you choose?
You can read more of Sensei Lene's writing on The Seated View