Six Years

I have an anniversary coming up. It’s not a happy one that I celebrate. It’s a sober reminder of how much my life has changed. Six years ago, I fell ill with an unknown disease. I missed a long anticipated family trip because I was hospitalized. I had three surgeries within 3 weeks. I spent weeks in the hospital with no one knowing what was wrong. I learned what a central line was and that it sucked.

I discovered that doctors can be clueless. Pre-2010, I thought they knew a lot. By 2011, I knew they didn’t. As I steadily declined, there were fewer and fewer attempts to figure things out. By 2013, I had lost 140 pounds and was unable to eat. A flaw in contracting made it possible for me to be seen at another hospital. So, I lived 14 hours away from my family for 6 months while the doctors figured it out.

And they sort of did. Lots of different things were discussed. I’m just now realizing how easily fixated doctors become when they see certain words. Words that indicate something might be fixable. It turns out, doctors don’t like unknowns.

I’m finding out that the less a doctor knows about something, the more they avoid it. I’m in a status quo relationship with my doctors right now. Hey, I’m still alive. It’s okay to let things go because I’m stable. No need to try to figure this out because, well, it won’t change anything, will it?

But, what if? What if just one doctor decided to look deeper and try to figure out what really went wrong and whether it could be fixed? Would I regain some freedom? Not have to carry a bag of fluids all the time? Be able to do things beyond walking? Eat a salad again (yeah, you never know what you’ll miss until it’s gone)? Not worry about how much I will “pay” for enjoying a meal out with friends? That’s a lot of what ifs.

Six years. I no longer have paid employment. I’m not sure anyone would hire me because of the bag of fluids on my back and the service dog by my side. I struggle with feeling helpless. With feeling useless. I should be doing something, right.

Well, maybe one day. Maybe one day I can be fixed. I can ditch the pumps and medications. I could go horseback riding. I could take a Zumba class (that may be a stretch anyway). I could go out to a movie and eat popcorn. I could live without medication alarms. I could go back to teaching. Flitting dreams right now.

You always hear people telling you to live each day to the fullest because you never know what life will bring. I encourage you to do so. Get out and be passionate. The laundry will still be there tomorrow. Take time to enjoy what you love doing. Slow down and savor your food. For that matter, savor everything.

Live. Love. Laugh.

The comfortable patient

Two days ago someone said something to me that, well, left me a bit shocked and peeved. This person is a medical professional…a nurse to be exact. As we rolled through the litany of questions asked at all appointments, she commented on how comfortable I was being a patient. I asked what that meant and she replied that because I know “all the answers” I obviously love being a patient.


So I’ve been thinking about how many other medical professionals feel this way about me. I mean, I keep an overnight bag packed because I never know when I’ll be admitted. It contains all my favorites including foods that I know won’t make me sicker. And pajama pants because, well, I’m not a fan of hospital gowns. And extra chargers for my electronics. Does this make me “comfortable” being a patient?

I don’t think so. It’s just after 6 years of this, I know what will help and what won’t. I know what treatments work and which ones won’t. I’ve reached the point where I can read shorthand notes in my chart. It’s only because of the twists and turns I’ve lived through.

But, is this why I am received with skepticism when I do go to the hospital? Is this why doctors think I’m just a drug seeker? Do my nurses really feel I’m just after attention? It sure would explain many of their behaviors.

So, to the medical professionals….no, I’m not “comfortable” receiving medical care. My knowledge isn’t a matter of me trying to “out think” you. It’s just that I live with this every single day. I’ve been through enough to be able to know how to get through one more time. Just because I’m not “sickly” enough for you doesn’t mean I’m not sick.

And pajama pants are way more comfortable than flashing everyone.


Yes, again. I spent 5 long years being told I’m a drug seeker. My illnesses are psychosomatic. I am making myself sick. Munchausen’s Syndrome. Finally, I received several diagnoses that explained everything. Five very long years.

Last week I fell ill from a common virus. In less than 15 minutes, a doctor completely wiped out everything I went though. Invalidated said diagnosis. Put it in my medical record that I’m only after drugs. That the only illness I have is psychiatric.

Unless you’ve lived it, I doubt you can understand how crushing this is. People with chronic illness not only have to fight their illnesses, they have to fight for their medical care. Every doctor thinks they know the answers. They invalidate each other, confusing patients and creating chaos in their wake of emergency room diagnoses.

One of the doctors this past week told me a diagnosis from one doctor was not sufficient. Seriously. The diagnosis came after 6 months of testing at the Mayo clinic. And somehow this doctor practicing in a town of 400,000 (whose resume is limited to a single city) knows more than 14 docs who have access to thousands of patients with rare disorders.

I doubt that the doctors have any idea how much damage they have wrought upon me. I doubt they even gave it a second thought when they wrote those notes. Just another piece of meat passing through. Another set of notes. No matter that I have more volumes of medical records than my friends combined. Just ignore everything that has already been diagnosed because YOU know better.

Now I begin the process anew. I don’t really have the emotional energy to do this, but if I don’t, when I need emergency care again I can guarantee I won’t be treated appropriately.

Remember, words matter. Once you’ve said it, you can’t take it back. Think about the implications of your words. Consider how much damage you can cause with your words. Choose wisely.

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: