Response to “Letter to Patients with Chronic Illness”

There is a blog post that is making the rounds again. It’s actually a great that I find myself nodding in agreement with as I scroll though it. But, there are flaws when the sentiments are applied to my medical care, which I am guessing is much like many other’s experiences. You see, the blogger has opted to go into private practice, as in no insurance accepted. He makes his decisions without codes and policies hanging over his head. I respect that, but it just isn’t a reality for most people. So, here we have an excellent post that when shown to a “regular” doctor, we get laughed at.

Don’t come on too strong – yes, you have to advocate for yourself, but remember that doctors are used to being in control.  All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.  That’s a good thing in the long-run, but few doctors want to be greeted with that reality from the start.  Your goal with any doctor is to build a partnership of trust that goes both ways, and coming on too strong at the start can hurt your chances of ever having that.

Ok. I get that. But having been beaten down by so many doctors I’d say I’m a bit jaded. I see others who do come into an office with that automatic “respect” mentioned here. Those people are becoming fewer as Dr. Google tears down the mystique of “doctoring.” I say that doctors should just over themselves and their God complexes and get back to the job of doctoring.

Show respect – I say this one carefully, because there are certainly some doctors who don’t treat patients with respect – especially ones like you with chronic disease.  These doctors should be avoided.  But most of us are not like that; we really want to help people and try to treat them well.  But we have worked very hard to earn our position; it was not bestowed by fiat or family tree.  Just as you want to be listened to, so do we.

Respect is earned. Everyone should receive a certain level of respect because that is part of being civil. But, if you want more than that, try earning it. I respect that you went to school and decided to take on this job. I respect that you have more knowledge about certain things than I do. I respect that you have chosen to be a doctor. I want you to respect that I too know many things you do not. I too went to college and while I chose a different vocation, it doesn’t make me “less” than you. I want you to respect that I came to you for help, not to get into a contest of “who knows more.” If you want me to listen to you, try listening to me first before offering more of the same platitudes I’ve heard from others before you.

Keep your eggs in only a few baskets – find a good primary care doctor and a couple of specialists you trust.  Don’t expect a new doctor to figure things out quickly.  It takes me years of repeated visits to really understand many of my chronic disease patients.  The best care happens when a doctor understands the patient and the patient understands the doctor.  This can only happen over time.  Heck, I struggle even seeing the chronically sick patients for other doctors in my practice.  There is something very powerful in having understanding built over time.

Ah, a beautiful sentiment. Please, yell this from the rooftops to anyone that will listen. Doctors change practices, move out-of-state, quit the job, You leave us just when we start to think you have a clue.

Use the ER only when absolutely needed – Emergency room physicians will always struggle with you.  Just expect that.  Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home.  They might not fix your pain, and certainly won’t try to fully understand you.  That’s not their job.  They went into their specialty to fix problems quickly and move on, not manage chronic disease.  The same goes for any doctor you see for a short time: they will try to get done with you as quickly as possible.

I wholeheartedly agree with the idea of only going to the ER when absolutely necessary. I wish the insurance companies made this possible. Right now, some practices are so booked that the only option a patient has for being seen in the next two weeks is to go to the ER.

But, here’s another side. When I go to the ER, something is so wrong with me that I can’t manage it at home. Trust me when I tell you that I have tried everything I can to avoid an ER visit. By the time I throw in the towel, my body is so far gone that only emergency treatment is going to make a difference. Now, treat me as an emergency. Stop trying to blame everything on my chronic illness and treat what you see. Give me fluids to fix the dehydration. Give me pain medication like you do other patients who are in pain. Stop questioning my “motives” and do what you proclaim to do…solve the emergent problem.

Don’t avoid doctors – one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address.  I can’t work that way, and I don’t think many doctors can.  Each visit should address only a few problems at a time, otherwise things get confused and more mistakes are made.  It’s OK to keep a list of your own problems so things don’t get left out – I actually like getting those lists, as long as people don’t expect me to handle all of the problems.  It helps me to prioritize with them.

I avoid doctors. My “experience” has shown me that even if I show up with something “routine” like an infection, my doctor’s will find some way to make me feel like I’m wasting their time because it’s part of being chronically ill. If I don’t come in with a big, complicated problem, I get brushed off so the doctor can move on to the next patient. What you see as allowing things to build up, I see as me coping with the small stuff you wouldn’t have dealt with anyway.

Don’t put up with the jerks – unless you have no choice (in the ER, for example), you should keep looking until you find the right doctor(s) for you.  Some docs are not cut out for chronic disease, while some of us like the long-term relationship.  Don’t feel you have to put up with docs who don’t listen or minimize your problems.  At the minimum, you should be able to find a doctor who doesn’t totally suck.

Another nice sentiment. Driven by the insurance companies we rely on to help pay for the very expensive care required to keep us going, we don’t have that many choices. We are assigned primary care managers that we can only change once a year without penalty. How many years of “suck” are we going to have before we find one less “sucky?”

Forgive us – Sometimes I forget about important things in my patients’ lives.  Sometimes I don’t know you’ve had surgery or that your sister comes to see me as well.  Sometimes I avoid people because I don’t want to admit my limitations.  Be patient with me – I usually know when I’ve messed up, and if you know me well I don’t mind being reminded.  Well, maybe I mind it a little.

A reminder for doctors…this is a two-way street. Forgive us for being, in your eyes, too pushy. We’re probably at the end of our ropes trying to cope with not only the demands of our illnesses but also with the lives we want to have. We don’t want to be constantly reminded that we are our own best hope because everyone else has better things to do than work with us.

Chronically ill means life is inherently different and most likely harder than for someone who is relatively healthy. As doctors are generally “healthy,” it stands to reason that while they can empathize with a chronically ill patient, they really do not understand how hard we fight every. single. day. We are plagued by stereotypes placed upon our heads by doctors. Our insurance companies know us by name because we are constantly battling to find the less sucky part of the road. And just when we think we have found “the one” who will listen and learn and try to help us, we discover….

That the reality is doctors have “solvable” problems that allow them to feel successful rather than helping people obtain the best quality of life possible when living with chronic illness.

Here’s the link to the original letter:


Dear Doctor…

Do not go where the path may lead, go instead where there is no path and leave a trail.~ Ralph Waldo Emerson



Dear Doctor,

I really wish you could understand that the human body is an ecosystem. Everything that happens affects every part of the human body. It’s not as simple as fix this and everything will be fine. Your fixes have frequently created more problems in my ecosystem. And, by the way, each ecosystem is unique and responds differently than any other ecosystem out there.

If only you could pull all the information I have about my ecosystem into your head and see what my life really looks like. Maybe you would stop guessing so much. Perhaps you could admit that you don’t understand and need to study things some more. On a shooting star, I wish you’d stop telling me that all my problems are psychosomatic. I have consented to your tests, hospital stays, blood draws and office visits so you could have data you knew how to quantify and draw conclusions from. Now all I want is for you to follow through and do your job.

That’s right. Do. Your. Job. Use your powers of inquiry that got you into your chosen profession. Stop limiting yourself to the narrow box that has come to define your idea of disease. It’s rumored that we use less than 20% of our brain’s capacity. Imagine what you could do by committing even 1% more to solving the mysteries of my life.

Stop complaining about me wanting answers. Stop denying me basic medical care because you don’t believe I have any illnesses. Stop reading just one line of my chart and spend a few minutes seeing where I’ve been to help me get to where I’m going. Stop treating me like I’m an idiot and have no idea. Stop trying to use terminology you think I won’t understand in an effort to “satisfy” my line of questioning. Just STOP.

Before you start griping about me, think about how you would feel being on the receiving end of your statements. Think about what it’s like to be told you are purposefully making yourself sick. Think about the impact your words will have on me. I came to you because I wanted help and hopefully answers. Not because my self-esteem needed another hit.

Act. Tell me your theories. Give me space to tell you my experience, which may answer more questions that you have. Apply your knowledge and realize that my ecosystem is rather precariously balanced. Don’t just toss out random lines of thought. Do your research and be ready to DISCUSS, not tell, the information. You see, I’m not quite the idiot you make me out to be. Maybe that’s what knocked you off course and made you think it’s all in my head. Just a hint…while I may not have a medical degree, I’ve been sick long enough to know my own symptoms AND to recognize where you are blowing smoke up an orifice.

The Patient You Blew Off Today


Earlier this week, I was asked why I advocate. The discussion was both about my own advocacy in pursuit of healthcare and the advocacy I do for people affected by disabilities. As I tried to explain that being a “sheeple” was not in my nature, the following two pieces came to mind.

“Once, on ancient Earth, there was a human boy walking along a beach. There had just been a storm, and starfish had been scattered along the sands. The boy knew the fish would die, so he began to fling the fish to the sea. But every time he threw a starfish, another would wash ashore. “An old Earth man happened along and saw what the child was doing. He called out, ‘Boy, what are you doing?’ ” ‘Saving the starfish!’ replied the boy. ” ‘But your attempts are useless, child! Every time you save one, another one returns, often the same one! You can’t save them all, so why bother trying? Why does it matter, anyway?’ called the old man. “The boy thought about this for a while, a starfish in his hand; he answered, “Well, it matters to this one.” And then he flung the starfish into the welcoming sea.”
― Loren Eiseley, The Star Thrower

This reflects my own struggle to get doctors and healthcare professionals to understand that I am deserving of their time. I have recently been feeling that my health is only a priority to me. My last set of physicians dismissed me while I was medically unstable because I “used too many resources.” Fortunately, I believe I am now with a group that is interested in my care. The last two weeks, I been able to establish care with providers who have taken the time to hear my story. They have not dismissed my illnesses as psychosomatic. I am now receiving the care that should have been happening for the last two years.

“First they came for the communists, and I did not speak out—
because I was not a communist;
Then they came for the socialists, and I did not speak out—
because I was not a socialist;
Then they came for the trade unionists, and I did not speak out—
because I was not a trade unionist;
Then they came for the Jews, and I did not speak out—
because I was not a Jew;
Then they came for me—
and there was no one left to speak out for me.”

― Martin Niemöller

I have considered this piece as one of the most important lessons that came out of World War II and the Holocaust. It projects the effects of apathy on the human race. For me, it gives the impetus to advocate for those whose voices may not be strong.

Both pieces highlight the importance of doing something…whether for yourself or someone else. When you turn away from others, you are denying yourself the opportunity to lift someone else up. And there is really nothing quite like the feeling of making a difference.

It Wasn’t Personal Until…

If you don’t like something, change it. If you can’t change it, change your attitude.~ Maya Angelou

I’m the kind of person that believes in live and let live. First do no harm is one of my favorite statements about life in general. I don’t take many things personally because we’re all human beings who make mistakes. But, at some point, you realize that someone has risen to such a level of incompetence as to cause harm. At that point, I move into “protect myself” mode.

Let me start by saying I rarely set out to anger someone or cause drama with supervisors. I honestly believe that most people are hard-working individuals who are trying to perform well at their jobs. Sure, every now and then a person slacks off. I’m even guilty of that in my own life.

I’m medically complicated. It’s that simple. The medical community I have been interacting with is in way over their heads. Three weeks or so ago, there was a decision made that I was a “difficult” patient. You can interpret “difficult” however you desire. But, my main doctor flat-out said that I complain too much and am using up too many resources as they attempt to resolve my complaints. I found out about this decision two weeks ago…during a medical emergency when the ER doctor walked into my room and asked me which hospital I wanted to be transferred to because there was a “Do Not Admit” note on my record at that facility. Did I mention this facility is considered to be a major medical center?

If you’ve been following my blog since August, you’ve already read some of my writings about the medical community. I’ve had great interactions with a fairly significant group of people. People I could probably be friends with if it weren’t for the situation. Most medical people seem to be more or less normal and probably live “normal” lives outside of work. There just seems to be two forces at work in the medical community, neither of which bodes well for consumers.

The first is organizational inertia. This happens when the processes just stop being functional. It’s like when I saw a specialist two weeks ago who prescribed a certain medication. I went to have the prescription filled at a retail pharmacy only to discover my primary doctor had to approve it. So I went to pharmacy #2 which just happens to be a military pharmacy, handed over the prescription and walked out the door 30 minutes later. No questions, no authorizations. I can’t figure out why the process exists. Organizational inertia also occurs when people start pointing fingers at each other and acting on rumors. Had the medical community I am involved with acted reasonably along the way, there probably wouldn’t have been a panic moment when my primary doctor realized I had not been told that I was being dismissed as a patient.

The second force is what I like to call “fiefdoms.” Fiefdoms happen when a person decides they hold all the cards and attempt to micromanage situations. They stop communicating with other people who should be involved in decisions and act solely to wield imaginary power. You can find fiefdoms in every possible industry, but in the medical field fiefdoms can be deadly. Imagine a doctor who thinks they are the expert on a medical condition and decides to ignore other opinions from their peers. Or a doctor who no longer listens to a patient because the doctor has decided what is wrong with the patient and refuses to entertain any other diagnosis. Now you get the picture of how this is a problem for patients. I’m not saying that a cold isn’t a cold. But, if it lasts for 10 weeks, perhaps a bit more investigating should be conducted.

So, to all the people who I’ve angered, stepped on or walked over in the last two weeks…I’m not even going to apologize. You can blame lack of resources, being bound by policy, overworked, underpaid or whatever. Don’t take it personally, but those things are not my problem. YOU are my problem because you refuse to see the impact your decisions have on ME. And when your feathers get ruffled and your supervisor starts looking closer at your actions, you have no one to blame but yourself. Don’t even try to blame me for being “difficult.” If you see something is not working, try to change it. Don’t succumb to inertia. Don’t cut yourself out of the loop and think there will be no consequences. Take responsibility for improvement. Change can be painful, but not changing is really a luxury none of us can afford.

Place Palm Here

Everything has been said before, but since nobody listens we have to keep going back and beginning all over again.~Andre Gide

I have spent the day explaining over and over to people why something needs to happen. Literally, the entire day. And I am no further in this quest than I was this morning. It seems that common sense really is a flower that doesn’t grow in every garden. The gardens of bureaucrats could sure use some re-seeding.

What now? I like metaphors, so imagine a rather large monkey wrench being thrown onto my set of train tracks. This wrench has the potential to, at a minimum, cause me to become more disabled. The stakes go up from there. It seems that efforts to reduce costs and “improve” efficiency have reached a level where policy is more important than people.

Yes, policy made by people in positions ranging from clerk to essentially CEO/COO has thrown my train of life off the track. Lest you think this has no effect on you, I will acknowledge that this involves healthcare which is something we should all be passionate about. In the name of progress, American healthcare is evolving. While some of the first ripples of this change are being felt by certain sectors of the public, those who receive any kind of medical benefit funded by the government are already experiencing great, sloshing waves. It seems this sector was designated as the roll-out platform. For some people this is wonderful news, at least for now. I just can’t wait until everyone gets to experience what happened to me.

People who only know my name and policy number decided that I was not deserving of care. People who have never met me, never spoken to me and most certainly never examined me decided that I was too expensive. What’s that you say? In 2014 you can’t be denied care because of pre-existing conditions! It seems no one noticed the standard of care is not defined. Yes, we will all be able to receive medical care. There is no guarantee it is the best care. There is absolutely no guarantee it is appropriate care. It, however, is guaranteed to meet the barest minimum of standards. And, since companies who offer “extended plans” will be assessed financial fines, we are all now guaranteed to receive the absolute minimum that can be provided.

For some people this medical care is more than they ever received and I am glad that many of my friends in the disability community will now receive care. Having had mediocre care for the last 23 years, I am now finding that the new standard is much, much lower than even my mediocre care. I surely did not realize how low the standard could go. Here I thought all the medical mistakes and oversights were just blips. It turns, out, those blips are defining my new standard of care. What I consider to be the low points of my medical experience are now appearing to be the high points. And the best part is…I get to pay MORE for less care. Wow, feels like socialism to me.

But, I digress. Congratulations to those who will receive benefits. It is indeed sad that we as a nation provided less care for our population than we did for the populations of other countries. No one should be shut out of healthcare because they can’t afford it. To the rest of us, welcome to the new standard. Unless you have the means to travel to private medical facilities and pay completely out-of-pocket for all your expense, your wake up call is coming.