Defintion PA-TIENT: Someone who is receiving needed professional services that are directed by a licensed practitioner of the healing arts toward maintenance, improvement or protection of health or lessening of illness, disability or pain. (US Centers for Medicare & Medicaid Services)
If you’re healthy, it’s unlikely that you spend time thinking about what being a ‘patient’ means to you. If you’re fortunate to have access to basic healthcare services, you have regular appointments with a healthcare provider from birth on. Typically straightforward and predictable, these check ups usually include tests and maybe immunizations and hold few surprises. The biggest issues you face include remembering to make the appointment, making time for the appointment or paying any costs involved.
It’s pretty easy to play the role of passive patient . . . until something changes. If it’s acute illness or injury, the patient or caregiver might adopt a more active role. But that lasts only until health resolves to the status quo.
When I was 27, I had two urinary tract infections (UTI) within a two months. I hadn’t seen a general practitioner since college so a friend recommended a family practice doctor. When he asked if anything else had changed, I told him about the numbness and tingling in my left hand. Since these symptoms seemed odd, vague and weren’t visible, I hesitated to tell him, figuring he wouldn’t believe me. When he ordered some tests, and nothing showed up, I was relieved when he said it was probably a pinched nerve that would heal. But the numbness/tingling continued and it was uncomfortable and sometimes painful. When I started experiencing this in other parts of my body, the GP sent me to a neurologist who ordered more tests. Also negative. Months later, when I lost vision and couldn’t lift myself out of bed, the neurologist ‘s diagnosis was multiple sclerosis. Within two years, I’d slid from being a ‘casual patient’ into the world of the chronically ill.
At some point in our lives, we all slide into chronically difficult health – – unless death happens first. Maybe it’s an injury that doesn’t heal or illness that doesn’t have a cure that takes us there. When it happened to me, I was clueless. I had no idea what I was in for. In 1980 there was no internet with online information and communities, no self help books or therapists or coaches to guide me.
The thing is that although I never resisted this change in my role from passive to professional patient, I haven’t liked becoming that person. There are days, months and years when being a patient is all-consuming and other times that it slides into the shadows. I’d much preferred to have spent that time developing my career or just having more fun with those I love. I’d gladly have taken a different turn in the road and not had this life with illness, continued being the confident risk taker, that cocky healthy person I was. If you know anything about me, read any of my posts or looked at my book (Keep Working ,Girlfriend!), you know that I’ve tried to normalize this experience. Some days it works.
Whether it’s a full time, part time or occasional job, being a professional patient doesn’t require a degree but it does require that you learn a new language, acquire new skills and develop experience. I wrestled with balancing this with the other parts of who I am and I imagine that you might, too.
So I share what one of my favorite bloggers, Ronni Bennett, “As Time Goes By … what it’s really like to get old”, wrote after her diagnosis of pancreatic cancer,
- Get over being a professional patient. It is what you are now. Live with it.
- Accept the changes the disease is placing on daily life. They are your new normal.
- Focus on what is possible now, not how life was before.
If you’re reading this, you know that you don’t have to be old to develop chronically difficult health. I used to think it would be easier to live with this if I’d been “old” or at least much older than I was. But now that I’m ‘older’, I know that’s not true. It’s never easy. But I can keep on looking for what makes it as gentle a ride as possible.
What are you looking for? How’s it going?