To Google or Not to Google? That is the Question

Well, actually, no it isn’t. On a basic level you should never do a straight up Google search for anything health related. Or, if you do, you should be prepared to take anything you find with half the planet’s production of salt in accompaniment.

 

I say this after a recent doctor’s appointment whereupon I was, with good humour, banned from Googling the problem because as we both agreed “Google will assure you that you have cancer”.

 

To give a short background, I have a solitary swollen lymph node (or that’s what we’re assuming it is at present) at the back of my jaw. It’s come up very quickly and having ruled out throat and ear infections doesn’t seem to have an underlying reason for deciding to wake up and party. I get the results of rushed-through blood tests tomorrow, and as far as I understand it the urgency is to do with the size and character of the swelling in that it’s hard to the touch (but it does move, which apparently is a good thing).

 

For the moment then, I look like I have about a couple of inches worth of spare lower jaw on my right side.

 

(All the better to eat you with, etc.

Image from www.boneroom.com)

Let’s examine this example for a second. Good old Google would no doubt inform me that I have a Hodgkin’s Lymphoma, being in the most prevalent age bracket and showing a couple of the possible peripheral effects of recent weight loss and a general status of “under the weather” – because as we all know, they’re completely specific to cancer.

 

I’m positive (knowing a great deal more about my circumstances than Google does) said weight loss and my general feeling of malaise have to do with the horrible build up to our move and the fact we’ve barely stopped since in terms of unpacking and the general things you have to buy, put together and do when you move into a new house. Nobody’s kidding when they say moving home is one of the three most stressful life events you can experience (alongside a death and a divorce).

 

In fact, for the sake of accuracy I even checked this earlier today (sorry Doc, but you can’t knock me for checking a theory) – put in “solitary swollen lymp node” or indeed “swollen hard lymph node” and the top few search results will be articles with the words Hodgkin’s Lymphoma helpfully emboldened, just in case you missed the fact that YOU DEFINITELY HAVE CANCER.

 

Not cool, Google.

 

I am of course being monstrously sarcastic here, but I’m using this to illustrate the point that unguided and unrestrained internet searches are not helpful things in regards to health. Particularly as patients with long running conditions with unspecific and widespread symptoms, it is productive and helpful in the long term to wise up about how and where to search.

 

Firstly, don’t just Google it. If you need to search a particular symptom or condition, use medical websites. Patient.co.uk is a good resource, WebMD is another. You’ve more chance of getting something specific on a website like that than you would have on a general search engine. If you have a diagnosis already and are trying to find out if a symptom is typical or could be something new, head to websites specific to your condition.

 

If you can find a forum board dedicated to your condition, so much the better. Start a topic about your symptom (if you can’t find any existing ones) and you’ll find most patients are happy to share their experiences in the hope of being able to help.  

 

I’m probably teaching many readers to suck eggs, but it is so important to not fall into the traps of believing whatever Google tells you, particularly if you are new to the realms of chronic illness and finding these things out for the first time.

 

More importantly, bear in mind that even those sorts of websites can only give you a general overview, or an “average” take on the symptoms and the condition. They’re based on how a condition “usually” presents or what a symptom “generally” indicates – which is why they are not to be wholly relied upon in conditions where the number of symptoms is quite large, or where the main symptoms are general such as fatigue or joint pain.

 

Using those two as examples, there are a myriad of conditions in which those two either separately or together occur, and fatigue in particular is one of the most general medical symptoms in existence. Fatigue can be a symptom of just about anything - yes Google, including cancer!

 

Taking the above into account this brings me to my most important point. Never self-diagnose.  Do your research and compile any information you think is relevant, but always take it to your doctor.  The information available on the internet, though helpful, is just too general to be used to form a concrete diagnosis.

 

Even when backed up by the experience of other patients, remember that chronic illnesses usually have the particular quirk of being quite different from individual to individual. A symptom match doesn’t necessarily dictate a diagnosis match, however much it might appear to “fit”.

 

If you don’t feel you’re getting anywhere with a doctor, always remember you have the right to request a second opinion or indeed take you and your health elsewhere. It’s important in long term ill-health to maintain a good doctor-patient relationship and that means both halves of the relationship being happy that the other is pulling their weight. If you want further reading material resources, you can always ask your doctor where they recommend you looking.

(“In the name of love” or “Hammertime”? You choose!)

In my experience doctors will appreciate the question far more than you (however well-intentioned) attempting to be a Google physician.

 

On that note I’m going to leave you, as I need to go do some reading into why it might be that Fiddler is seeking to destroy a particular patch of our hall carpet which seems to have offended him in the last few days. Maybe it’s calling him names after we’ve gone to bed of a night.

 

Answers in the comments section as to which of them we’re betting Google thinks is the potential cancer patient – the cat or the carpet.

 

I hope this is taken in the tongue-in-cheek manner in which it is intended, and I hope it is helpful. It’s very easy to get caught up in internet research that appears to fit, but it’s always best to approach this with a critical eye and with your doctor’s guidance and support.

Wishing you all many spoons xxx

A not so cunning plan

This wasn't a subject I ever expected to have to touch on. In fact the need for a post brought me back to the age old phrase “common sense”. Whoever first called it “common” probably needs to be sued for false advertising, because it doesn't seem to be that common at all.

The topic? Playing about with medication.

(Yes indeed. Image from keystone-wealth.com)

However frustrating a relationship you have with your doctor, they are there to help you. I can understand the frustration – I remain resolutely unimpressed with my GP surgery and their apparent allergy to reading notes but all I've needed for the last six months are repeat prescriptions so there’s been little room for them to mess up or indeed improve. However it doesn't matter what you think of them – they still know more about the cocktail of medication you might be taking than you do.

Dealing with combinations of medicines isn't as simple as sticking “don’t consume alcohol whilst taking this” or “this interferes with the contraceptive pill” labels on things (and even the latter isn't so simple, given thinking has changed in recent years with regard to most antibiotics, and not everybody you meet in the medical world has caught up yet!). There are many different factors to consider in what can be prescribed to a given patient.

The peculiar problem with chronic conditions is that a lot of patients end up on more than one form of medication, and some are taking so many tablets a day you’d expect they’d rattle if you picked them up and shook them (no, that’s not an invitation for anyone to pick me up and shake me. I may not rattle but I will punch you in the face.) What you then run into with multiple different drugs is the concept of interaction.

Put simply, some medications behave better when they are combined with other drugs than others do.

Hands up if you've ever heard of Serotonin Syndrome? No, neither had I until the topic of medications interacting came up on a page I frequent recently.

Serotonin Syndrome is a potentially life-threatening reaction to drugs which affect the body’s natural level of serotonin, such as some SSRI antidepressant drugs and some opioid painkillers such as tramadol (a usual suspect for severe cases). It occurs when drugs are incorrectly combined or can be the result of an overdose of a single drug. Symptoms range from headaches to total renal failure and include uncontrolled muscle twitching, nausea and diarrhoea, hypothermia and tachycardia.

Something else you should probably know about Serotonin Syndrome: severe cases can and do kill.

The phenomenon gained widespread attention with the death of a college student in the USA in 1984. Libby Zion died of undiagnosed Serotonin Syndrome caused by the combination of the opioid pethidine and phenelzine which is used in the treatment of major depressive disorders, mistakenly combined by a medical intern. Her case led to the implementation of laws on the hours interns are allowed to work and greater supervision by their seniors.

(Just one Google search comes up with this table - a lot of those drugs are common in the treatment of chronic illnesses. Just something to think about.

Image from uspharmacist.com)

Why this rather depressing interlude in the usual sunny climes of TRB? Well a message appeared on said page involving someone deciding they knew better than their doctor and ignoring the advice they had been given to not combine tramadol with their existing medication. The person then blamed their doctor for the plethora of symptoms which resulted from the toxic combination.

In short it could be deduced from the symptoms and medication involved that they’d given themselves an attack of Serotonin Syndrome. They wanted sympathy for this, but they most certainly did not get it.

One of the reasons I’m still only taking the one form of medication is that the reasonable options left either would interact with the amitriptyline (which has been so effective I don’t want to be taken off it) or are incredibly strong and not suitable for long term use. One of them in fact can only be used for about a year and then the withdrawal symptoms include seizures. Ouch.

Needless to say that while I can manage without such medication I will do so. I did take tramadol for a little while, and whilst I didn't suffer the drowsiness and confusion a lot of patients report as side effects it did upset my insides rather a lot and so was vetoed.  

The heart of the matter is that this is something that very much rests in the hands of medical practitioners – not patients. I definitely thinks it’s wise to smart up about what you’re taking so that you’re aware of what you can and can’t take with it (the label inside the packet should tell you a fair bit) but it’s idiotic to start taking your life into your own hands and combining, particularly when you have been told not to.

The same goes for taking yourself off medication without your doctor’s knowledge and therefore usually without the advised “weaning off” period. Going cold turkey from powerful medication is never going to be a pleasant experience, and it’s just not wise to do it of your own accord. 

I know it’s a phrase oft-repeated that chronic illness patients know more than the doctors who treat them, and that can lead to some complacency on the part of patients as to the role of or indeed need for their doctor, but in this instance it couldn't be further from the truth.

Nobody likes a smart arse. Particularly one they discover is not actually very smart at all.

Wishing you all many spoons xx

30 Day Chronic Illness Challenge: Day 20, 21 and 22

Apologies for the blip in regular posting! Should be back on track as normal now. 

Day 20: Have you met anyone with the same illness? Did it help?

Yes! I've met some lovely people (mostly through the internet) who have either Fibromyalgia or IC and their support is a wonderful thing. Often it's not direct, it's just about their presence and knowing that there are people out there within reach who need no explanation of what you're going through - they get it. I've said before that other ill people in general are good people to know without sharing the same condition necessarily - there tends to be a level of understanding regardless of the specifics. I do genuinely feel quite blessed in this regard.

To give an example of why this is important, I spoke to a new recruitment agency on Friday and booked a meeting for next week. On approaching the conversation "I was diagnosed with Fibromyalgia..." I was pleasantly surprised to hear in return "Don't worry, one of our consultants has it so you don't need to explain yourself. Do you need to work somewhere which has a lift?"

Completely unexpected and really quite wonderful!

(My old horse riding tutor used to say this all the time - whilst it's fine in theory it didn't stop me wanting to slap him each and every time. It's rather like saying "expect to suddenly involuntarily leave the saddle!" Image from www.123rf.com)

Day 21: What networks or websites have you used for support and information about your illness?

Originally I stuck almost exclusively to medical websites, mostly Patient.co.uk to try to get a feeling for the mass of symptoms associated with FM in particular and just for reassurance I wasn't going mad. I'm sure we've all considered that option at least once!

I was already a Tumblr user and soon discovered that the Fibromyalgia, IC and indeed chronic illness tags were full of people willing to share their experiences and offer any help they could. This progressed into finding forums and eventually Facebook groups.

I've listed the ones I settled with and think are the cream of the crop in The Warrens tab. I find the Facebook groups are particularly good as people tend to be very friendly and open in answering questions on just about anything, and idiocy and nastiness just aren't tolerated. Mostly though, it's lovely to log in on any given day and find my dashboard full of inspirational pictures, thoughts and words. An easy and inexpensive way to start the day well!


Day 22: How do you feel you have been treated by the medical system? Explain.

Whilst I definitely had my share of frustrations with the medical system, I think generally I was treated quite well. I was initially treated under Gastroenterology which turned out to be the wrong department entirely, but we weren't to know that at the time and they were incredibly thorough and I must say didn't mess about in making sure everything that could be tested was.

I was at first still under the GP surgery I had been registered with at birth and they were particularly obstructive - a very "old school" practice which was pretty rigid in its thinking. If it wasn't fixable in one appointment with one prescription they were quite happy to behave as if it was anyway. Once I upped and left, I had a much easier time. I firmly believe had I not moved to the surgery I chose to go to I would still be undiagnosed to this day. Only there did they decide to really investigate all the symptoms, hurry through relevant referrals onward without delay and think a little outside the box.

As much as I and other patients often have legitimate reason to moan about treatment under the NHS, I'm still incredibly grateful for its existence. I dread to think what that first round of futile testing under Gastroenterology alone would have cost me otherwise.

30 Day Chronic Illness Challenge Day 3

Day 3: How did you get a diagnosis?

Apologies for a late addition today! I have in fitting fashion been, as a friend of mine rather aptly terms it, "flaring all over the show".

(Diagnoses are a little like dragons to me - elusive, a little mythical but probably hiding somewhere. You're judging me, I can tell. Stop it.
My favourite of the D&D dragons, the Lawful Good Silver. Courtesy of draconika.com)

In my case as previous readers are aware this is in fact "diagnoses". They happened quite separately and in entirely different circumstances. I'll start with the Interstitial Cystitis as it is by far the simpler of the two.

I mentioned in a previous post my time spent under Gastroenterology, and during this time I had a fair few visits to hospital and in routine tests I kept showing up with an apparent water infection. Having had a run of actual ones in the previous couple of years I was a little skeptical - I'd describe the symptoms as similar but with enough difference that the sweeping ten second diagnoses were starting to pray on my mind. It took five courses of antibiotics doing not a damn thing for a previously unseen doctor at my hospital's GUM clinic (I'd long since given up hope with my GP of the time) to raise an eyebrow and write me a referral to Urology.

Which my then GP surgery promptly lost. Now I don't swear habitually, but I think I probably swore more in that moment than I had for the rest of the year up to that point put together. I was not a happy lady.

This prompted a very successful change of doctors surgery to a newer once which opened locally. I find it somewhat amusing looking back at how I approached my first appointment. I probably resembled a tightly coiled spring and was ready to bite at the slightest provocation.

My new GP gave me absolutely no provocation whatsoever. He listened to me recount the symptoms and talk about the lost referral, drew up a new referral request on the spot accompanied by words to the effect of "this nonsense has gone on long enough" and as I left feeling a little foolish he said something so utterly out of character from my experience with doctors thus far that it virtually floored me:

"Don't worry, we'll find out what's wrong with you. You're not going mad. Keep your chin up."

Two months later I went for an initial appointment with Urology, who diagnosed me with Interstitial Cystitis based on symptoms alone in under five minutes. A cystoscopy was considered for absolute confirmation but as I'd just recovered from a run of three internal cameras (all of which had caused problems in the aftermath) it was decided to my lasting gratitude that I didn't need anything else put in places it probably shouldn't go. Also, the rather frank and earthy description given of the aftermath of a cystoscopy rings with me to this day:

"Fair warning, it's like pissing glass for a week."

Remembering that discretion is the better part of valour I beat a hasty retreat.

(Baldur's Gate's Minsc on retreat - "There is no shame in returning another day with bigger swords!" - a nugget of rare wisdom found in the midst of screaming "Go for the eyes Boo!" at every opportunity.

Image courtesy of mmo-champion.com)

Diagnosing the Fibromyalgia which is by far the greater of the two in terms of effect was somewhat more long winded. I don't think this was anyone's fault really as it took a long time for the muscle and joint problems to be looked at in a separate light to the bowel issues. Once that decision was made (again under the new doctors surgery) then a long haul of tests began.

As my Dad has Rheumatoid Arthritis this was first on the list to be checked for. No inflammation markers at all, so onward!

Lupus? Really? But that's a joke on Hou- apologies doc, I'm sure you've heard this one already.

After the round of Lupus antibody tests came back clear along with several others (having five vials of blood taken made me seriously wonder if they were secretly farming it...) my GP seemed a little lost on returning for my next visit. In doing a general search for information on chronic pain she stumbled upon the tender point test which I'm sure fellow Fibromyalgia patients are probably familiar with. My understanding is that a definitive diagnosis is reached if a patient reacts to pain in at least 11 of the 19.

I forget how many the GP had tried when she had to pick me back up having fallen over and curled up in a ball until the pain subsided. She put a negligible amount of pressure on each point with two fingers, and the only description which comes close is like having white-hot fire pushed through the skin and into the muscles and tissue underneath.

Let's just say I never want to repeat the process. However I'm hugely grateful to that second surgery, as I firmly believe I'd be lost in the diagnosis loop to this day if they hadn't stepped forward and been prepared to think outside the box.

Sometimes a fresh pair of eyes and innovative thinking can be beneficial beyond words.

... part two

So, I said I'd come back and give my take on that letter when I was calmer. Discussion of part one last night certainly made for an interesting evening.

Because I don't view the TRB as being about negativity - that isn't what I created it for - I decided I'd challenge myself and try to argue both the good and bad aspects of that letter, as I firmly believe there are plenty of both.

(I'd love to have a debate like this!

Courtesy of digitaltrends.com)

So, the good:

I read the piece again this morning and I think I can understand the main point the doctor wanted to express. Whilst "You scare doctors" understandably immediately sets hackles rising, I don't doubt for a second that it's probably true.

I can appreciate being a doctor is a difficult profession. You don't have all the answers and solutions expected of you, and no doubt do meet your share of patients whose expectations are wildly off kilter from reality. That must be an incredibly frustrating experience.

I can understand the frustration mentioned in relation to chronic illnesses. You can never fix us. We are what we are and we repeatedly come to you to manage the unmanageable, to help relieve the unrelievable. I can even as a patient myself understand on some level that this is a frustrating and probably upsetting experience.

In some ways it is interesting and informative to be given the other side of the doctor-patient relationship, and to be given a possible explanation for the sometimes incredibly negative experience chronically ill patients have with their doctors.

And yes, even as a patient I do understand your flawed humanity. Speaking from personal experience I don't go into a doctors surgery expecting a miracle. I go in expecting to be listened to and understood, and to take it from there. I appreciate it's a very human thing to not wish to be confronted with your own limitations.

Reading to the bottom of the article and the tips listed there, some of them are indeed quite helpful. Keeping our eggs in a few baskets is sensible, Limiting the use of emergency departments and the reasons for why - nothing at all wrong with that. I'm sure most of us have had hair-ripping-out frustrating experiences with A&E or our country's equivalent. And I've said myself earlier in this blog - if one half of your doctor-patient relationship isn't pulling its weight, it needs to be replaced. Finding the right doctor is indeed key to overall health and the management thereof.

I can also understand the basis behind the point on "coming on too strong" - I know myself that my poor past experiences lead me to go into each new appointment already feeling defensive and ready to bite. I've already reached the conclusion due to past doctors disinterest that if I don't advocate for my own health, nobody else will.

The principle lesson is don't tar every doctor with the same brush, and I agree. We shouldn't do it, it isn't fair. But I also know from personal experience it's an incredibly easy trap to fall into, and the more bad experiences one has with different doctors, the more defensive and negative one is likely to become.

I can't fairly sit here as a patient and disagree with the fact that there are things patients do "wrong" which are just as counter-productive as the things their doctors do wrong.

(It's worth remembering this is one doctor's opinion - this one seems to gainsay some of it.
Courtesy of tmjhope.org)

However, the bad:

Whilst I can understand the idea behind the piece, the execution is for me the largest part of why it is problematic. For me at least the wording has been quite poorly thought out and comes across as negative and condescending.

Mostly it's the three central paragraphs of metaphors concerning what chronic illness patients "are" to doctors which I found most disturbing:

"But chronic unsolveable disease stands square in our way....We want the miraculous, and you deny us that chance."

"You are the rock that proves how easily the ship can be sunk."

As much as the gentleman does go on to say "I'm not saying it's your fault" the use of those phrases and others like them does apportion blame - they imply that patients are actively doing something to get in their doctors way. We're actively causing the problem, and we're deliberately setting out to tear down the doctor-god delusion.

The intention was more than likely good, but the execution for me makes a mockery of the original intent.

My biggest sole problem is that without wishing to appear a martyr, setting up the doctor experience in direct comparison to the patient one and implying comparative ill-fortune was not a constructive road to venture down.

As a doctor the gentleman has picked his profession, hopefully knowing all the pitfalls which accompany the perks.

As a chronic illness patient, we none of us picked our situation. We, unlike our doctors, had no choice. To make a comparison between a freely made decision and a genuinely powerless swipe of ill-luck is on the one hand condescending, and on the other in my opinion extremely foolish.

A good comparison was made by a friend yesterday - if you work in retail, you're expected to be nice to all your customers no matter what and you gripe only behind closed doors. The point is made in this that doctors get frustrated and angry with their patients - surely the same standard of professionalism should be expected and fulfilled? Do your grumbling elsewhere, but treat your client or customer with respect and compassion.

Offering up "we're human and fallible" as an excuse doesn't hold a great deal of water with me either. We're all human and fallible, but we're still in the wrong if we don't treat other people with the respect they are due - your profession, whatever it may be, does not excuse you from this.

I am very strongly against the idea of playing the game of "if you have a black cat, mine is blacker", and it frustrates me immensely when I see people playing that sort of game with the topic of illness. Having said that it's my belief that the doctor and patient experiences just aren't comparable and to try to do so isn't helpful and offers nothing constructive. However, that's just my view.

(As black cats go, this takes some beating. Photograph by Sarah Plove)

In summary

I'm sure it's clear I don't like the article very much. Whilst I can applaud the intention behind the piece, I have real problems with the execution and wording of said original intention. Whilst (I think) trying to offer an insight into the other side of the coin, the gentleman has ended up in my view embroiled in one-up-manship between doctor and patient and this results in condescension and a seeming lack of a grasp of perspective.

What do others think?

Stranger than you dreamed it...... (part one)

I came across this on Tumblr earlier today. I think I might be able to appreciate what the doctor in question was trying to say with the entire article (which is here) but I feel quite strongly against the way he's gone about some of what he's said.

For now I'm not really in a place to come up with anything constructive, and if I try to write something considered (as I always try to do) I'll only wind up spitting bile.

So, I thought I'd copy in the bit that particularly bothers me and let people have a look, and then later (possibly tomorrow) when I'm possessed of a cooler head I'll come back and say whatever I then feel I have to say.

The gentleman in question is trying to advise chronic disease patients (I think) but in the course of doing so brings up the fact they frighten doctors. I can sort of understand why we might do, but the three paragraphs of problematic metaphors for patients and the (I hope accidental) set up of the doctor experience in comparison to the patient one is extremely non-constructive in itself.

See what you think:

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.