UPDATE: I have just changed the blog-theme, lay-out and background colours of this blog, as the old format turned out difficult to read on smartphones, but I'll need a few weeks to adapt each of the 71 blog posts here to match the new colours. So apologies for the blog STILL being difficult to read due to light pinks and greys in the text (which are now unreadable with the new light background). Am changing it all in the next weeks.
"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. [..] 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."
Thoughts of an odd, but not harmful primary care physician.
A Letter to Patients With Chronic Disease
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.
Post Script: This post has generated a huge amount of conversation and interest (as witnessed by the large number of comments!). I very much appreciate the dialogue it has spawned both here and across the web. I’ve subsequently written follow-up posts explaining my thoughts in more detail – largely in response to the comments here. One of them discusses in more detail my own experiences as a doctor and the second talks of the importance of knowing and being known. Reading these will give you a better picture of my thought process and perspective on this.
There are some good comments displayed here
Update December 30th 2018
this blog post and wants to try my anti flushing medication; clonidine, propranolol and perhaps also mirtazapine and an antihistamine like Xyzal. But primarily clonidine and propranolol. The problem is that he cannot find a dermatologist who is understanding of his flushing problem, and willing to let him try this meds. He asked my advise, and I think anyone in this same situation needs to offer his or her specialist or GP some research papers to convince them. If you scroll up in this post, you will find a list of research papers for each of the medication discussed. Pubmed articles are particularly handy to print out and to show, as medical specialists like to see in black and white that an off-label medication is actually effective for the symptom at hand. They are often worried to go off the beaten paths and away from the textbook treatment protocols. But it is important to explain that up until now, there is no official flushing treatment. Nothing. The only thing specifically designed to control flushing, Mirvaso gel, is a liability of a product that has made many users flush worse or made their rosacea worse even in some cases. Medication in pill form is much less risky and can actually really help controlling flushing. A doctor needs to compare it to hot flushes, but then ongoing ones that are not hormone driven often, but that nevertheless widen the blood vessels of the face regularly. Causing pain, heat and worsening of the dilation of the weakened vascular network in the face. Just like with untreated varicose veins. We need to control the flushing, in order to be able to control rosacea subtype 1 or neurogenic rosacea.
I am always worried about invasive treatments like laser or IPL for our subtype of rosacea, to be honest... If they stir up your rosacea and make it worse (which was the case for me), you are often stuck with the outcome! Whereas with medication, anything but steroids is a temporary thing. You try them and if you feel things are getting worse on them, you stop taking them and no long term harm is done. So it surprises me always that dermatologists are more easily swayed to offer laser or IPL treatments than they want to prescribe prescription medication. After all, flushing is a very difficult symptom to treat and if left untreated, it can worsen rosacea over the years and make the problem harder and harder to tackle.
He also asked about what medication to best use, or start with, to reduce facial flushing. My advise:
"I would start with clonidine if I were you. No doubt about it. 0,05 mg seems a very low dose.. I take 0,150 mg every 8 hours, so 3 times a day. You could start with 0,1 mg, three times a day. This is still a reasonably low dose, but I don't think going much lower will be doing much for the flushing tbh. It is very important to take clonidine 2 to 3 times a day, I'd say 3 times as after 8 hours it can give rebound redness and flushing. This medication needs to have a stable blood level dose, and if you want to stop, you slowly taper its use off.
I would try this for one month, then re-evaluate. And add propranolol then. I find it the best beta-blocker out of all the ones, for flushing and redness. But opinions differ on that one. Propranolol 40 mg pills can be taken as needed. You don't need to take them at specific intervals. No rebound issues. But I take 40 mg 3 times a day, together with the clonidine. When I have a bad flare, I take 80 mg (two pills) instead. Again, i would try this med for a month and then re-evaluate again."
Hope this helps someone :)
Update November 27th 2018
A friend told me about trying to find a good psychiatrist, to discuss the psychological aspects of rosacea with. I have seen a couple of psychiatrists and psychologists during my 20's. I think mainly because back then, it was the dermatology department of the hospital that forced young dermatology patients to see a psych. for at least 10 sessions, in a bid to reduce suicide/depression levels in this group of patients. It seemed important to me to go, also because I was very restless back then and suffered deeply from the anxiety and isolation that my rosacea gave me. Nowadays I have accepted things much more and found a balance for myself that I am more happy with. I don't know if that counselling helped with that, in retrospect. I feel it didn't but you never know. It can be hard to find a good fit when it comes to counselors: I have seen four different ones in the past and only one connected with me really. Or connected to my issues I mean. The rest didn't seem to 'get' the problems I have due to my rosacea, burning and flushing, and didn't really help me in the way I wanted to be helped; with suggestions for practical changes. I don't want to do psychoanalysis for four months and talk about my youth for 60 euro an hour. My issues don't stem from my youth, they stem from rosacea and having a burning red face since age 19.. Nevertheless I did end up talking once a week, for six whole months, about my past and had a psychoanalyst dig into it, trying to find patterns and explanations. I don't think there is anything there, other than a happy, free childhood and a difficult adolescence. Maybe some things that happened back then made me more prone to despair once my rosacea started. But for me, unraveling those threads didn't help me practically with the hardships of an isolated life and daily pain. I wanted help with that.
I didn't feel smarter than these psychologists or anything, but I did feel at some point that there was some obvious transparency regarding what text books and protocols they were following. I did not like answering the most personal questions, from a time that felt like another life almost, but whenever I asked them an opinion on something current and pressing and literally asked; what do you think? They refused to answer! They don't want to throw in their subjective opinion (aka; they want to follow the protocol) and that just didn't work for me; talking to a question shooting wall of professionalism. I always said that I knew they aren't allowed to steer my decisions in any way, but that I talked to them for hours on end about certain topics and would like at least a hint of personal opinion back. Nope... Their silent gaze, making notes, often seeming far away, lost in their heads, just alienated me further. I had a practical problem, not related to bad parents or trauma's from childhood; the reality of that day was bad enough.
Frankly feel that counseling someone with a chronic, debilitating, visual illness is tricky territory and requires someone with the right balance of experience, empathy and ability to connect and talk honestly.. I was told by a female psychiatrist who I saw for a year or two perhaps even, that I should just try to be more outgoing. The fact that I missed that (I can't go clubbing or be as outgoing as I used to be with a throbbing red face mask on); she thought I had developed an unrealistic fear of it. She constantly pushed my problem in the psychological corner, when I felt it is 90% physical and as a result of this need to stay cool, and to cool my face literally, I have in effect developed psychological difficulties. Chicken or egg... But it was hard to find some councilor or psychiatrist who hooked onto that and who didn't start to dig into the past like a Freud-adept. It also helps to find a professional who has a character that matches (or complements) your own, and someone who is proactive and who can reach you. Who seems interested and dedicated to your 'case'. After the age of 27 I stopped seeing counselors all-round.
I read a very good article from Brady Barrows on his RRDi website:
Some notes from him: "I have said it before and I will continue to say it again, self-diagnosis of rosacea is not a good idea. Physicians, particularly dermatologists, are trained and educated in the art of diagnosis and should be the ones to determine a diagnosis of rosacea. There really are no substitutes. You may want to consult other health care professionals as well for rosacea, but diagnosis of rosacea is reserved for physicians . Please get a diagnosis. The problems with rosaceans and physicians have become public knowledge posted all over the internet and are listed here for your information and consideration to resolve these issues. It is important to work together with a physician in determining an accurate diagnosis and a personal treatment regimen for your skin problem. What matters need to be identified and resolved? Trusting a physician, communicating with a physician and following up with your physician’s treatment.
Trusting & Communicating with your Physician
A typical initial visit with a dermatologist begins with making an appointment usually weeks in advance, sometimes months. In the meantime, a rosacean (or one who thinks rosacea is the problem or hasn’t a clue what is going on with his/her skin) is reading as much information on rosacea on the internet or by reading this book or other books, asking everyone, trying whatever non prescription , over the counter, products and methods one thinks might work or is suggested by well meaning friends. This sufferer reads about rosacea and has determined that it must be rosacea or it may be possible that the sufferer has no idea what skin condition is the problem.
Finally the day arrives to visit the dermatologist. One must wait in the waiting room for what seems like an eternity with other patients who obviously have their own skin issues. You are ushered into an exam room where a nurse or other assistant takes a brief history and may take some vital signs and records everything and your chief complaint. You wait some more. Finally, after what seems like another eternity, the physician enters the room and spends maybe 10 minutes with you, explains to you that you have rosacea, gives you some samples to try, hands you a prescription and tells you to make a follow-up appointment. The physician rushes off to the next exam room. You are left stunned. If this is the first time you have ever heard of rosacea, you are a bit more stunned than those who have read this book. You may no doubt relate to this initial first visit with a physician. Rosaceans who experience this are a bit upset at the lack of patience, empathy and compassion for rosacea patients. It is not to say that all physicians are like this, but this experience of an initial visit is typical. Complaints of the lack of physician empathy for rosacea is common among the various rosacea support groups and forums. There may be several reasons why this happens, but first and foremost is to understand the physician’s point of view. Rosaceans tend to be self-centered, and that is understandable, since after all, we are the ones suffering with rosacea. Rosacea is a very confusing and debilitating disease. It changes your life forever.
Rosaceans come to a physician for comfort, help and treatment and want some compassion, understanding and communication. But wait a minute. Think about it. Remember, we are coming to a physician for help. We need to make it possible for the physician to listen to us, but at the same time we need to keep our minds open to what the physician may tell us. Knowing the physician’s point of view will help you establish better communication, trust and hopefully better treatment. Follow up visits will be better and you will look forward to the visit rather than dreading it. Becoming a physician is not an easy task. The medical schools make physicians go through some hoops and hurdles that many just simply would not even attempt. Generally speaking, physicians are very dedicated, hard workers and usually have higher IQs than the general public. It would be a mistake to think otherwise, since if this is not true, then we are certainly at a loss. I like to think that physicians who have attained to being a licensed medical doctor are more knowledgeable than me on rosacea. This entitles them to some respect, whether you agree with a physician or not. You can disagree with respect. The two initials behind their name, M.D., gives them the title doctor. It would be wise to recognize, honor and respect their office of appointment as a practitioner of medicine. Rosaceans who treat their docs with disrespect will not get very far with physician treatment. It is important for rosaceans to give their doctor the honor they deserve that goes with the title and this alone will improve communication better than all the other tips on how to win friends and influence doctors.
With the advent of lawyers, physicians have to cover themselves with malpractice insurance that affects patient care since one of the chief concerns of a physician is whether or not it is possible to keep practicing medicine in such a litigious world. You may not think this is important to your care but this affects physician care of a patient. It would be good to understand that it isn’t easy to care for patients when a patient could turn on a physician and bite him. Physicians may be very careful when approaching a new patient who may be a rattlesnake. Because of the nature of rosacea and psychology (see Chapter 6, Psychology and Rosacea) rosaceans tend to be frustrated, upset, angry, confused, disappointed, depressed, and possibly aggressive. While the physician should be aware of the psychology factor in rosacea, a rosacean needs to understand what the point of view of the physician is on this subject. While one physician understands the psychological factors in rosacea, another physician may dismiss these factors as minimal, which explains the physician’s behavior.
Physicians are usually very busy, with a huge patient load with other patients who are suffering horrible skin conditions, which, by the way may be worse than your rosacea [or whatever skin condition you may suffer]. A physician may prefer to refer a patient with psychological rosacea issues to an expert dealing with such problems, like a psychiatrist or a psychologist. Find out how his point of view is on this matter if you are feeling upset at a physician’s bed side manner. Besides, the physician has treated rosacea before and for the first visit, this is what is done. Now if you have been to other physicians before, this takes on a whole list of other reasons why it is so important to understand the physician’s point of view on the initial visit. Did you explain to the physician that you have been to another (or possibly other physicians ) for this problem? The physician has a right to know what you have done before coming to him, doesn’t he? The only way to understand what the physician’s point of view (POV) is to ask. For example, you might ask him, ‘Doc, are you really busy today to answer my questions?’
Or how about, ‘Doc, I see that you are in a rush and need to tend to other matters, but could you answer just a few of my questions or would it be better to make an appointment later to help me understand some matters that are important to me?’ If the physician has the time you might want to point out how you are feeling about your rosacea, i.e., the frustration, anger or depression that accompanies rosacea. You might be surprised at what the doctor’s point of view is if you respect his and take into account that a physician has a right to his own point of view. The physician may have more empathy with your point of view if you have empathy for the physician’s POV. When making an appointment with a physician for an initial visit and you want questions answered, it would be good to explain to the one whom you make the appointment with that answers to your questions are important and want sufficient time for the physician to answer your questions. This might go a long way to help the doctor understand your needs. If you present yourself as knowledgeable on the subject of rosacea this can present some problems. After all, the physician has gone to medical school specializing in dermatology and you begin spouting out some rosacea knowledge to the physician, what do you think the physician’s point of view is of you telling him about rosacea? Remember, you came to him for advice, treatment and help? Rosaceans should want to build a good relationship with the physician and presenting yourself as more knowledgeable about rosacea than the physician tends to destroy the relationship considering that you are paying him for his advice, diagnosis, analysis, prescription and treatment.
If you preface a comment about your knowledge of rosacea with, ‘You probably know more about this than I do, but could you answer my question about [whatever]?’ will go a lot further to establishing a good relationship with your physician than belittling a physician or coming across that you know more than the physician about rosacea, which may not be true at all. After all, consider what the physician must know to differentiate rosacea from other skin conditions. The list of rosacea mimics and other skin conditions and diseases that requires a differential diagnosis from rosacea taxes most physicians. To conclude that a physician doesn’t know as much as he should about rosacea is a bit judgmental, wouldn’t you agree? A physician’s job can be at times quite demanding and overwhelming. With the patient load and who knowswhat else is happening in a physician’s life, if we come across like know-it-alls about rosacea, do you really expect a physician to go along with such disrespect? Maybe a physician prefers to dismiss such a patient quickly and move on to one who appreciates his services more?
“Dermatologists need to ask their patients about their use of all medications including herbs, vitamins and supplements, according to Dr. Wu. “I suggest taking an extra five or 10 minutes to find out what your patients are using on their skin in addition to what you’re prescribing for them.” Rosaceans should build bridges with their physicians, not tear them down. Usually when a rosacean
visits a physician it is because everything else simply doesn’t work. It is the last resort, sort of like when one visits the dentist. So, instead of concentrating on what you think the physician should do, try to listen to his suggestions. The physician may be right. During the initial visit you should explain to the physician what other treatments you may be doing for your rosacea, i.e., natural treatments, over the counter products, herbal remedies, vitamins , supplements, diet, whatever. It is very important to explain to your physician if you have visited any other physician for rosacea before visiting him. The physician has a right to know what you have done for your rosacea before seeing him.
“Due to the fact that many patients fail to inform their physicians about their use of herbal ingredients, dermatologists should be aware of what patients may be using and be able to advise them about the efficacy of these ingredients or the potential for adverse effects.” This is especially true when you consider the synergistic effect of multiple treatments for rosacea. You physician deserves to know what you are currently doing to control your rosacea, even if it hasn’t been working. He may advise you to stop all other treatment and follow his treatment regimen or may explain that what you are doing is just fine and to continue it. But the physician needs to know.
Follow up Visits
Basically, whatever the physician suggests you do, usually a follow up visit is made. That is why the physician asks you to set up an appointment before you leave the office. This is done to follow up whether the treatment suggested is working. Why? Because not all treatments work for every rosacean. You have to be the judge whether to continue a treatment suggested if it is making your rosacea worse. There are some treatments for rosacea that initially make matters worse before it gets better. You should ask your physician whether or not the treatment he is suggesting will make it worse before it gets better so you will know what to expect. However, if it continues to get worse, you will have to be the judge as to when to stop the treatment and report back to the physician at the follow up visit what exactly happened. The follow up visit may include new treatment to follow. This is not unusual for a rosacean to receive several treatment regimens before finding one that controls your rosacea.
Finding a Physician
Finding a physician who is knowledgeable with rosacea and has a record of happy rosacea patients is the dream of all rosaceans who use physicians to treat their rosacea. Many of the forums and rosacea support groups offer suggestions or recommendations of physicians they have used and some report whom not to use. Word of mouth has always been the best source of whether a physician is recommended. Please also ask around on facebook rosacea health groups and on forums. There are some very good specialists out there. My own is a professor in dermatology and specialized in acne and rosacea. His name is Prof. Tony Chu and he works in Hammersmith Hospital in London and sees both NHS patients and private (international) patients.
Here are some very good and welcoming forums and online patient groups:
The Rosacea Forum
Rosacea Support Community
The Rosacea Research and Development Institute
A members only Rosacea in English facebook group
A members only Make-up for Rosacea facebook group
A members only Rosacea Healing from the Inside Out facebook group
The Rosacea Forum
Rosacea Support Community
The Rosacea Research and Development Institute
A members only Rosacea in English facebook group
A members only Make-up for Rosacea facebook group
A members only Rosacea Healing from the Inside Out facebook group