Tuesday, January 24, 2017

A More Meaningful Diagnoses

If we are facebook friends IRL (as the kids say), this post will sound familiar... It comes from recent doctor appointment and processing through the reasons I really wanted to push back on some of the things he said.

What he said was basically this -- that there's a lot medicine doesn't know; that there probably isn't a good, solid diagnosis out there to find; that even if there was, there probably isn't anything medicine can do to help me.

And here's the thing -- this wasn't the first time a medical professional has hinted that trying to find answers would be a fools errand; that I'd be better off just accepting life in limbo.

I'm approaching year three of the first trip to the ER that official kicked off life with This Crazy Illness. Three years into this.... So at this point I think it's safe to say that I'm probably not going to wake up tomorrow and just magically be well. This is what life is, for the foreseeable future.

Except that I'm not sure that's true, either -- after believing things had stabilized, and that we had a good sense of what things were, last summer the symptoms changed again. Nerve pain spread to my left side for the first time. I began having a much harder time recovering from big events. I'm not able to leave the house as much.... it goes on and on. Basically: since last summer, things have been going downhill.

The other thing, is that if you look at my medical records it looks like I've been through the gauntlet in terms of testing. My medical records are filled with tons of test results.

But none of them all that recent. I actually had very few tests in 2016. One or two major ones, but the last half the year was especially quiet. So almost everything is from before I started going downhill again.

Also, no-one has actually sat down with all of these records and tried to put them together. I have information in 6 different medical portals. My PCP has most of these, but if you think she has time to wade through and try to match up tests and dates, you have gravely misunderstood what the life of a doctor is like, and how much time they have to spend on patients.

So. What I don't think this doctor gave enough weight to was that I've been sick with a life-altering illness for several years, the illness is progressing, and we haven't been actively looking for an answer for the better part of a year.

Every doctor visit feels like I'm spinning my wheels -- a waste of time, energy, and emotional well-being. A deeper, more meaningful diagnosis would not magically fix everything, but even if it was rare, not well understood, and without many treatment options, I still feel it would be quality-of-life-changing in a number of ways.

These are some of the reasons I wish medical professionals would not try to dissuade any patient from seeking a better understanding of their health:

1. Tangible support

Even if someone has a rare (or not-so-rare) disease, without a great set of treatment options, there is still a LOT out there, in terms of help and support.

A diagnosis means being able to connect locally, regionally, and internationally with others in the same boat. It means being able to leverage knowledge-sharing from well-funded groups. It means benefiting from local organizations that provide tangible support.

A diagnosis can put you in touch with all sorts of resources, specifically there to help you just because of this new label you're given.

Physical Therapists who would know what to do with my balance issues. (I went through 3 who kept treating me like an athlete who just needed to power-through some strength training.)

Or info about mobility devices (NO doctor or therapist has provided helpful guidance on this, my only good sources of information have been from online communities).

And there are groups that help guide patients with specific diseases to specific specialists, meanwhile I've wasted time with doctors who don't seem to have any interest in a patient who has anything more complicated than the flu.

Without a diagnosis, you have to figure everything out completely on your own, with no benefit from anyone who has walked the same path before you.

2. New research

The amount of medical research going on right now is incredible - investigative research as well as clinical trials. If you're diagnosed with a disease about which very little is understood, and very little treatment options exist, in one to five years that reality could be incredibly different.

It's easy to say 'well a diagnosis for X won't get you anywhere, anyways. It's not like they can do anything about it.' But take a look at clinicaltrials.gov and then get back to me.

If I know what to call this illness -- more importantly - if my doctor knows -- then we can keep a close watch on research studies, try to gain access to clinical trials, and hopefully be ahead of the curve when the next breakthrough arrives.

Or better yet, be a part of the process that brings that breakthrough about.

3. Words to give to medical professionals

More than anything, right now I am just exhausted. Exhausted from having the same conversation with doctors over and over again.

I am NOT GOOD at explaining my symptoms. Doctors -- even good, caring, intelligent, well-intentioned ones -- have about 15 minutes with a patient, and I have a LOT of symptoms and history to get through.

If I had just a few words, which could explain even some part of this -- which would immediately translate to them some of the severity or physiology or life-altering-nature of this, it would be incredibly helpful. We could finally move forward instead of getting lost in the weeds or off on rabbit trails.

I need a better language to communicate with doctors, and a diagnosis would give me that.

I try to give people the benefit of the doubt. Everyone has a bad day. Everyone has a weird encounter every once in awhile. But I am so tired of having this conversation. Of trying to convince medical professionals that it would be worth looking a little bit further. That they haven't put all the pieces together yet. That there are things that seems small on the surface that could be bigger clues if they'd take a closer look.

And on the other side of things, I am so tired of being lectured over and over that patients should put their whole trust in evidence-based, science-based medicine, and stay far away from the internet. That is what I want. I want my western-medicine doctors to tell me the physiological reasons for my symptoms and the research-proven treatment options.

What are you supposed to do, when science-based medicine seems intent on giving up on you?

Patients have to walk a fine line in every conversation with doctors -- if I try to push too hard for a diagnosis, they seem to think I have an unhealthy obsession with needing to know every minutia of what might be going on, and worry that I might not be able to accept the situation I'm in; if I back off and let them lead the way, they think that I'm basically okay, just a little run down, and probably will feel better after a few months of rest.

I am so frustrated with this catch-22. I don't think it's unreasonable to keep asking questions about an illness that has turned my life upside down, and seems to be getting worse.


  1. Don't give up! Keep pushing and keep making doctor appointments until you get answers. No one cares about your health more than you!

  2. It's definitely frustrating when doctors don't want to give a diagnosis because it won't help. I know sometimes they want to help you avoid insurance issues, but even then....it's a pain.