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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?
Alyson says
Well, Rosalind, I’ll admit that I misunderstood your preamble to your latest post–when you said, “If you’re lucky, you take being a patient for granted,” I read that as “you take being a *professional* patient for granted.” At first, I was a bit taken aback–how can it be “lucky” to have to be a professional patient, since it means you have a whole lotta health issues to deal with? But even after I read your post and realized what you’d actually meant, I thought about what I’d originally thought you were saying, and I realized that, really, I *am* lucky to be someone who takes for granted being a professional patient. I’ve been seriously ill since age 8 (so for 41 years), and being a professional patient is almost all I’ve ever known. I do remember life before my illness–being a robustly outdoorsy, physically active kid–and I also remember that accepting my new life as someone who was ill and needed to see doctors all the time took many years. (This wasn’t helped by how traumatic those medical appointments and tests were for a young child–thankfully, pediatric care has become more humane than it was in the 70s and early 80s.) But now, having medical appointments several times a month is just life, and because I now have doctors I like very much, I sometimes even enjoy those appointments–especially if a doctor has a med student shadowing him or her and I can “teach” that student by sharing my experience with my illness. And it’s kind of cool having a graduate degree in a humanities field but still being asked by clinicians if I’ve had medical training. I relish opportunities to educate future doctors and nurses based on my own life with a chronic illness and have thankfully been able to do that through programs at a local university hospital/medical school.
I realize that for most people–those who become ill as adults, and whose plans for life are suddenly turned upside-down–being a professional patient is very difficult to get used to. But I just thought I’d share my quite different perspective.
Rosalind says
I can’t tell how much I appreciate your thoughts on this. Not for a minute do I think I have all or even some answers – I try to ask questions to get conversation going. I love that you respond online. I appreciate people replying directly to me but I can’t help but think that these comments are just as valuable as anything I might say or ask. Thanks, again.
Alyson says
I think you ask wonderful questions and have a lot of helpful insights. I’m still thinking about the post you wrote on the value of coaching and am considering whether I could benefit from that. (Will get back to you with an individual message on that hopefully soon.) So thank you for this forum and for your blog entries!
Karen says
I’ve been a professional patient for at least 30 years. It wears thin at times, but I am pleased I’ve got it down. I’m much more relaxed about tests, results, and what comes next. It doesn’t mean that I’m happy, but I no longer get worked up about things that happen to me. In the early days, I would get panicky when waiting for a test result. I would have researched every possible outcome and assume the worst was going to happen. Now, I still research, but have learned to wait and see what the results will be. I don’t look for trouble before it comes my way. It will either come my way or not.
Rosalind, I have followed you for a very long time. I’ve just signed up for your podcast!
Rosalind says
Alyson – I look forward to hearing from you when and if you are ready and interested!
Rosalind says
Great to hear from you, Karen. It sounds like you’re evolving in this world — and isn’t that what we have to do, healthy or not?
My podcast! I intend to try to record some of the older ones — but it’s so time consuming. And the tech stuff is always a challenge for me. Thanks for your interest though! That will motivate me to keep doing it.