No Diagnosis? It May Not Matter

Years ago I watched a movie called Serendipity.  It starred Kate Beckinsale and John Cusack. It was a “romcom” – and adorable – and it occurs to me that it sets the stage for today’s post.

The story was about two young people who met in Bloomingdales while shopping, and through a series of events, they were attracted to each other, but never exchanged names. They then lost track of each other. Over the years they continued to think of each other – and eventually both went in search of each other, even though they didn’t know the other’s name.

The unspoken belief was that they thought that by finding each other, the answers to all their questions in life would be solved.

Too many of us have a similar belief, even if it has nothing to do with Bloomingdales or Serendipity.

We have odd symptoms, the doctor can’t put a name to them, and we get continually more frustrated as our malady goes unnamed. Why do I have pain here?  Why does this fever recur? Where does this rash come from?

Hey – I get it. I’m IN that lack-of-diagnosis boat!  When I was misdiagnosed in 2004 based on a strange lump that had been removed from my torso, the resulting conclusion was that I DIDN’T have something – I didn’t have cancer. Unfortunately, I was never given a viable answer on what I did have. To this day I do not have a diagnosis, despite recurring and similar lumps, which show up sometimes 2-3 times a year.

So yes – I do understand that frustration!

On the other hand, I may be very different from you because, honestly, I spend almost no time fretting about it. I don’t search for a diagnosis any more. There are a few reasons for that:

1. So many people believe that if they can discover THE name for something, then doctors will know how to treat it, and possibly how to cure it. That’s not necessarily true. There are lots of conditions and diseases that have names for which there is no treatment. There may be treatment to relieve symptoms, but if you already know what the symptoms are, then knowing the name of the diagnosis is no more useful than not knowing it.
2. So many people think the name will provide a cause for their illness or debilitation. That may be true, but if it’s a lifelong cause (an allergy, or genetic, for example) then it may be impossible to change anyway.  If it’s short-term, then trial and error is required. (“If I eat a bowl of ice cream my blood sugar will go up!”  “If I use this brand of soap, I’ll get a rash.”)  But again, what they are trying to deal with is relieving the symptoms, and they already know what those symptoms are. Getting a diagnosis, a name for what’s wrong, isn’t required if one can determine a cause.
3. Some people have a need to place blame when something goes wrong in their lives. They seek a diagnosis, a name for what ails them, so they can blame something. I have no answer for that. I’m not much of a blamer. But I do acknowledge that for those folks who must blame, a name can help. It’s just that I’m not sure what it helps.

So why do I write about this lack of diagnosis today? My reason may surprise you.

I absolutely think that early on when you have to deal with difficult or painful symptoms, you need to put effort into figuring out a name, getting a diagnosis from your doctor.  And I even more strongly believe that if the diagnosis or treatment suggestions are difficult, will require surgery, or will require any sort of long-term treatment, you should be pursing at least one more diagnosis – if not a third or fourth.

Further, I think that if you can’t get a diagnosis, and you can’t find a treatment that provides relief, then you need to continue pursuing a name for what’s wrong with you. That’s where an independent patient advocate comes in. He or she can help you uncover new roads to travel in that pursuit.

However!  If you find the diagnosis isn’t forthcoming, but you can find relief from your symptoms through some sort of treatment anyway, then it’s probably not worth the effort to keep hitting your head against that lack-of-diagnosis brick wall. For one thing, you have already found relief, so putting your efforts into finding a NAME isn’t going to improve your quality of life.  Secondly, continued pursuit simply means more tests and procedures – and that can be dangerous and expensive when they won’t really help you anyway.  Finally, the only benefits to your continued pursuit are more money being taken out of your pocket and deposited into the healthcare system. No benefit to you. Too much benefit to them.

At the end of the Serendipity movie, the two young people do find each other, and of course, learn each other’s names. But no answers are forthcoming, because honestly, they haven’t really even figured out the questions.

What is true in fiction may also be true in life. In the early days of a medical problem, by all means, pursue answers. But when you come to the point where you’re managing despite not having a name – then just manage it and don’t waste your life on pursing those additional answers to the ends of your days.

Just live your life!  Get all the enjoyment you can out of your life without risking further medical problems or lining the pockets of the system.