Letter from Doctor to Patients with Chronic Illness

Thanks to JC Colyer for sharing this very inspiring message of a "Letter from Doctor to Patients with Chronic Illness" as written by Dr. Rob on July 14, 2010, in BEING A DOCTOR, BEST OF, JUST STUFF KIND OF THINGIES, PERSONAL MUSINGS.

It reads:

Dear Patients:

You have it very hard, much harder than most people understand. Having sat for 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I too can’t understand what your lives are like. How do you answer the question, “how do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body? How do you cope with living a life that won’t let you forget about your frailty, your limits, your mortality?

I can’t imagine.

But I do bring something to the table that you may not know. I do have information that you can’t really understand because of your unique perspective, your battered world. There is something that you need to understand that, while it won’t undo your pain, make your fatigue go away, or lift your emotions, it will help you. It’s information without which you bring yourself more pain than you need suffer; it’s a truth that is a key to getting the help you need much easier than you have in the past. It may not seem important, but trust me, it is.

You scare doctors.

No, I am not talking about the fear of disease, pain, or death. I am not talking about doctors being afraid of the limits of their knowledge. I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different. You see us getting frustrated. You see us when we feel like giving up. When we take care of you, we have to leave behind the illusion of control, of power over disease. We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress. You are the rock that proves how easily the ship can be sunk. So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge. You know more about your disease than many of us do – most of us do. Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain - is something most of us don’t regularly encounter. It’s something most of us try to avoid. So you possess deep understanding of something that many doctors don’t possess. Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease. It’s like a parent’s knowledge of their child versus that of a pediatrician. They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

So when you approach a doctor – especially one you’ve never met before – you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? It’s not your fault that you do, but ignoring this fact will limit the help you can only get from them. I know this because, just like you know your disease better than any doctor, I know what being a doctor feels like more than any patient could ever understand. You encounter doctors intermittently (more than you wish, perhaps); I live as a doctor continuously.

So let me be so bold as to give you advice on dealing with doctors. There are some things you can do to make things easier, and others that can sabotage any hope of a good relationship:

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.
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.
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.
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.
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.
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.
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.
You know better than anyone that we docs are just people – with all the stupidity, inconsistency, and fallibility that goes with that – who happen to doctor for a living. I hope this helps, and I really hope you get the help you need. It does suck that you have your problem; I just hope this perhaps decreases that suckishness a little bit.

Sincerely,

Dr. Rob

Hi Ben,

Thank's for sharing it makes a lot of sense!

HI BEN. THANKS FOR THE LETTER IM VERY FORTUNATE TO HAVE A GOOD PRIMARY RHEUMI NP DENTIST OPTHAMOLOGIST DERMATOLOGIST OCCUPATIONAL AND PHYSICAL THERAPIST PHARMASIST THATS NCE HE WROTE THE LETTER THWNKS FOR POSTING IT

This is good, Ben! Over the years, I have come to know much of this, I have had my GPs and my DC before all of this caved in on me. They knew the well me, so it was a combination of emotional growth that we shared, we got to know each other even better, became even closer, respect each other tremendously. Oh yes, there were raised voices sometimes, their frustration or mine. I have also been sent to various other specialists, some waiting 6 months to see that were absolute monsters, who blew me off, wasted my precious time while destructive autoimmune raged through me. It just did not show up, so they were still looking for problems from the car accident that kicked this up, it took time, patience and a while for the continuous x-rays and blood work, along with my second Rheumatologist to go beyond the fibromyalgia.

Seven years it what the current average time it takes to diagnose Psoriatic Arthritis, until the biologic Enbrel came out with a pro golfer advertising this med, my Rheum informed me that the average time for diagnosis was 35 years and that people suffered horrifically!

It takes an extraordinary Physician to care for chronically ill people, and an extraordinary patient to understand the pain of his limitations. If you find 'your Doctor', willing to try everything to help you, listen to you over the years, comfort you when nothing else will soothe you, you have found something rare and valuable!

A great letter. I cried while reading it - knowing we aren’t the “favorite” patient doesn’t concern me. It’s just hard to understand why doctors can’t be honest with us and refer us to someone who is willing to not waste our time and money. I don’t want to spend years going to a doctor who tells me the same thing every time and isn’t willing to do the research that we do. Of course we are going to doctor shop - I believe all of us as fibro patients just want pain relief. We aren’t dummies who believe we can get instant relief that will last forever! We’ve lived with it too long to think like that.

It does put things in perspective though. I can respect how a doctor feels knowing they feel like they will fail as they walk in the door. I hope I can let my doctor know that I totally understand their weariness. Maybe by letting her know this she will understand mine.

I believe we should be writing medical schools to petition classes specifically for chronic conditions as part of their education. Dr. Rob got it - but it took years. We can be their support and train them in how to handle US! We’ll work with them as they learn to work with us! Thanks for clueing us in!

This is fabulous!!! This should be required reading for every doctor and every chronic illness patient!!

Thank you very much, Ben and Dr Rob. Good stuff.

Thanks Ben for this Letter from doctor to patient. It makes sense and gives us food for thought about our visits to the doctor.

HONESTY from a doctor, love it. Thanks you for taking the trouble to explain what is happening in a doctors mind, and how we as patients can not only cope with it but also some strategies to deal with it. Thank you again. May I contribute one major point from my perspective, please please do not Practise medicine as if you know all the answers,as if all the secrets of the body are known to the medical profession, I truly believe if ever doctors can come to terms with the words, I don’t know, and the general medical professional is yet to fully understand this or that aspect of how the body works. Also, refrain from blaming the patient when the patients progress is not as expected. My thoughts. barb

Thank you barb, it was good to hear a chronically ill nurse on this matter, hopefully we will hear from more of our many nurses! We value your opinions!

That was very nice…I started to give up on my dr. , thought he had given up on me. I got a little teary one day…and he pulled up close to me on his stool and said I know you have fibro…and other issues…I don’t deny any of it…and if your willing to fight…I’m right here fighting with you…I have Not given up on you and I will Not! It does make difference when you know they understand or are trying to and are beside you!..

Thanks for posting this. It helps to see the other side of our situation as well!

Hugs,

Scribelle

Oh , so your name is Ben. This is an interesting letter from the perspective of your doctor. We need to read this letter and realise that doctor are ordinary people with years of education in their chosen profession, yet FM surprises them, it stumps them often...

Thanks for this letter, Ben, because it shows us the human side of doctors. They get frustrated too because there are times when they cannot help us.

Wow!! Thanks for sharing this!

This is great thanks for posting!

Thank you, Ben, for posting this for us to read. It's important for us to hear a doctor's perspective on patients with invisible chronic illnesses.

I wish all doctors were like this. Where is he located?? lol