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Chronic Snarkopolist: The Snarkopolist Way to Educating Yourself As A Patient

Post Published: 28 July 2010
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Category: chronic autoimmune conditions column, Chronic Snarkopolist, Column
This post currently has 20 responses. Leave a comment

Hello sassiest ones!

I was snarking around lately when I received another question from one of you.  It was a BRILLIANT question that every doctor, therapist, psychologist, physical therapist, and pain counselor would weep beautiful tears of joy over!  If more people asked these questions and then followed through and self-educated, the world would be a healthier place!

The question came from a beautiful reader:

“Obvious question, but: how do I, as a patient, understand the science of [my illness]? How do I educate myself on this one?”

This could be ANY thing really.  It could be about thyroid diseases, cancer, lupus, bipolar disorder, diabetes –  you name it!  This question is simply asking “How do I educate myself about disease it as a patient?”

Guess what my loves?  I OFTEN ASK MYSELF THIS TOO!  Just last week I had to go with my PhD research skills and Masters degree in Library and Information Science  medical database ninja skills in order to garner some trusty medical research at my local university that I COULD NOT FIND ONLINE. No way! It wasn’t there. Sir Google did not have it. Senior Wikipedia wasn’t giving me the dish.

So now what? What would average Joe patient do if the Interwebs won’t cough up the info they looked for? Honestly? And that is assuming they have ACCESS TO THE INTERNET and know how to DO a basic competent Internet search.  YOU are savvy. You know HOW to do online searching.  Imagine if you were illiterate.  Imagine if you were perhaps not so bright? Didn’t speak the language… going demented, dealing with other mental or emotional disabilities that created barriers to your cognitive understanding of your medical issues.

And then – consider how most physicians get all clinical. They don’t MEAN TO – but it is how they have been trained. They forget all the information in their heads is not zapped into yours. Or perhaps worse, they don’t care – you’re on a need to know basis and they don’t think you NEED to KNOW.

I was reading a medical blog by a woman who is getting her MD/PhD and she complains that she is NOT encouraged to ask questions in med school but is FORCED to do so in grad school. She has a difficult time with juggling it because med school FROWNS on question asking.  Imagine how hard it is for doctors to switch it back on and ALLOW patients to ASK QUESTIONS once they are back in the real world of answering patients questions once they aren’t TEACHING or being taught.  Crazy huh.

Imagine then these doctors who have been “nipped in the bud” too many times for asking questions being forced to trim down their schedules to 10 or 15 minutes and just go on cruise control… patient in/patient out.  They don’t MEAN TO – but it is A JOB.  We’re doing a little “walking in their shoes” here.  I’m  not asking you to FORGIVE them –just understand them.  They still have a responsibility to BE GOOD DOCTORS.  It is our job though – to figure out if they are going to do so.  If not – we have a duty to ourselves to move on and find one who is. Find the doctor who WILL help us out and give us information about the medical issues we are seeking.  There IS one who WILL take the time to help us understand more about the complex (or easy) disease, illness, or medications about which we wish to become educated.

Over coffee a friend who is also a doctor said, “It is up to YOU to remind us that YOU are more than a machine. We have been trained to see you as a machine that we fix.”  So, as your snarkopolist, I’m giving you that too.  IT IS UP TO US to remind our doctors that WE ARE PEOPLE FIRST and their machines to tinker with SECOND. That means EDUCATION is part of it. And if we want to educate ourselves beyond what they tell us – WE NEED TO START SOMEWHERE and they should support us in our efforts.

So – it starts with them – “What’s those big scary medical words you throwing out yo. SPELL PLEASE ?”  And then – grain of salt what your doctor says because DOCTORS ARE NOT ENCYCLOPEDIAS, they simply sometimes pretend.  However, in latin medicine doctor originally meant TEACHER of medicine… so doctors were educating their patients every bit as much as FIXING them. So remember that every time someone tries to fix you or boss you.  It starts with SHARED PERSPECTIVE.  If your doc and you can’t get on board with each other, you can at least try picking their brain.

Let me start here:

I’m NOT JOKING about this.  I have been EXPERTLY told how to wipe my own ass by a doctor no less than FOUR TIMES in my life. FOUR TIMES.  (And when I was pregnant the midwife made sure I knew how to wipe front to back too- because I hadn’t already figured that one out.) And I NEVER thought I was having any difficulty!  They just KNEW better than me. And here’s the kicker – no doctor has EVER given me the SAME advice and they have contradicted each other –even in the same specialty.

One said to use toilet paper – one said NEVER USE IT… ohmy- I digress – pictures- diagrams – I’m not sure I can get the hang of the complexities!  If I call loudly from the bathroom can you just come and take care of it for me? Life was simpler back then anyway…

(It satisfies me on some level that it takes an an M.D. and all those student loans to tell patients who are PERFECTLY happy with the way their mother taught them anyway how to wipe their own tuckus.)

I had to go online at a local university where I have been trained to do medical research only last week because I didn’t understand the diagnosis my endo gave me and he did not choose to discuss it until my appointment next month.  SERIOUSLY.  (He was having an off day. He is ALSO on thin ice). I had to find medical data and filter publications written for medical professionals to find out more information about my latest diagnosis.  I had to educate myself through medical jargon I know nothing about using the Internet to filter the big scary medical words.  I was angry and insulted that my doctor let me leave the exam room without even giving me a head’s up the other day.

Really? REALLY??

My good friend who also has a PhD told me she had to cry to her doctor– CRY IN TEARS because her doctor said, “You can just Google this online and find more about it.” My friend said, “Just because I’m smart and literate doesn’t mean I don’t want YOU as my doctor to tell me the basics. I want to know what you would tell EVERYONE and then I can go to the Internet.”  She wanted support.  She wanted to feel like she had someone there to help her through her scary (for her) medical times.

She cried.

Then her doctor stopped and actually discussed her health concern with her.  Doctors forget that what MIGHT be simple to some people is quite frightening to others.  Doctors are BUSY- and expected to have QUICK SERVICE and SHORT APPOINTMENTS. They are pressed for time.

Doctors are only a START. Keep going!

We must first start with them and go from there. Then – libraries, then online, then with each other. But NOT the whiney terrible attitudes online or groups where people only sink into a hole of despair and bad … I cannot go there. If I will not allow a doctor to tell me WHAT will become of my health so I will not let another patient tell me either.  So many patients seem to compete with their health – “I’m on this many pain meds and I’m sicker than you” – I WILL NOT DO THAT EITHER. There is no competition – there is only sharing and healing and together.

If there is an online forum where people are helping and giving each other good information – that is another good place to learn. Often times – THAT is where the best information comes from anyway.  I hate that it is so hit or miss.  Non-profit organizations are good too and they will be free of corporate ad money trying to SELL you things.

It is always good to do your research when finding help. And here’s the kicker – when you are desperate – when you HURT – when the situation is BREAKING YOU—that is often when you are doing it. When you just got “the diagnosis” – THAT is when you’re doing all the searching.  That is the sad stuff.

So – here’s what I would do. If I lived in a city with a library- especially a university- I would call there and ask to meet with a librarian. Then, if it is a STATE university- YOUR TAX DOLLARS also pay for it so you have a RIGHT to GO THERE! Then, I would make an appointment to go there (because you come second, after the students). And I would physically with my BODY ask to meet with the librarian, take the information you need to find – and have them do the research for you – and TEACH YOU HOW TO DO IT YOURSELF.

Then – you can start getting a good working knowledge of the medical databases (or whatever topic you are seeking). And you can probably check out several books at a time as well. These resources are POWERFUL THINGS.  If you do not have a college or university near you – you can also use your local public librarian who can also access these databases but they might cost you – because INFORMATION IS NOT FREE. However, if you have a disability or a medical problem, they might not charge you as it is a service they are providing for a member of their community.  The librarians might not have access to the databases where the colleges usually do.  It is a matter of money and resources.  Again- a librarian can TEACH YOU how to find the information yourself.  And that is a POWERFUL TOOL.  Ask them to show you how. Make time for it – they should be HAPPY to do it.

Another sneaky secret – many major hospitals have small libraries with AWESOME databases and highly trained medical librarians that are JUST FOR DOCTORS (for their crazy cases that they’ve never heard of). THIS IS A SECRET. Do NOT tell them I told you this.  If you ask your doctor VERY SWEETLY – he might get you a personal appointment with the librarian at the local hospital.

This is worth a trip – even if it is several hours away!  This is especially true if you live in a very rural area and are having a difficult time finding any doctors or specialists in your area to meet with you.  I’m SURE your doctor can pull some strings IF you are very persuasive that you wish to SELF-EDUCATE and the two of you come up with some good questions about your illness or concern and YOU wish to take control of your own health.  Your doctor should be naming children or grandchildren after you by this time.   (Also- YES- if you e-mail me I CAN AND WILL help you do topic search too- but your doctor is probably a good first start. I’m more of your backup wing man see… ).

While you are in this hospital I would have also called ahead and asked to meet with a few specialists if possible – or at the very least – left messages asking them to prepare a talk on the topic in the future.  A nice bigger deal – asked if YOU and they can work as a team to prepare a talk or possible future support group at the library or civic hall for OTHER PEOPLE who are suffering from the same concern.  Many doctors might consider helping you start it up or at least talk to you– especially rural doctors.  Most doctors really want their patients to have these resources.  And rural doctors do NOT have enough time, money, or energy for it.  If YOU become a resource, you will become their best good friend. Perhaps YOU can become the local expert.  The world has a strange way of working.

Go to ANY information sharing seminars in the area, ask doctors and therapists in the area WHAT THEY THINK.  Many are BRILLIANT. Ask them if they blog or ask them to SPECIFICALLY to write a blog on that topic. Most of us have MANY areas we are good at but don’t let our lights shine because we don’t think people WANT to hear it.  If you asked people to start telling you information, they just might.

Keep in mind – EVERY SPECIALIST can also be full of shit. Or half full. They CAN and often WILL contradict each other. Remember the toilet paper story. In the end – you can often cobble together your OWN special sauce of perfection.  Or – you will find the perfect FIT FOR YOU.  You MIGHT get lucky and find a specialist who works JUST RIGHT not too soft and not too hard… but mostly you might have to read several books, learn some bio-feedback, maybe travel to another city and go to a workshop some fall, twitter sometime an learn about some topics.  Self-education takes WORK and perseverance.

And NONE of it feels good when YOU feel bad. This is especially true when you are in an acute (hair on fire) situation versus your usual chronic situation.  So – if you have JUST LEARNED about something – take the time to ask your doctor “woah – hold up- give me some more information.”  If you MUST – go back and take a list of questions. I know they hate that shit – but do it anyway. YOU NEED TO FEEL OK about it.  This is especially true if someone in your family died of that particular illness or if you are just being diagnosed.

DO NOT EVER go to the ER for something like this.  They have NO time for education and hand holding.  They’re there for shanks through the jugular.  Hold out – go to your regular doctor about it.  If you do not HAVE a regular doctor, now is a GREAT TIME to establish one. Use the earlier snarkopolist methods to make a relationship and enjoy the trip.

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20 Responses to “Chronic Snarkopolist: The Snarkopolist Way to Educating Yourself As A Patient

  1. Monica says:

    So much good information to start with!!! However, it sounds so exhausting that I wonder what type of person would jump through these hoops to gather information pertinent to thyself. When I want answers I am the first one looking every where to find them, but who would have thunk that you had sneaky secrets to share with us?

    ☮ ♥

    • Melissa Travis says:

      Hello Monica!
      Thank yo so much for writing in! My pleasure to share secrets!! I have been packing to move – so it has been difficult to answer sooner – please forgive me!!

      I look forward to having many more discussions with you!
      Cheers!
      Melissa

  2. It’s a shame that doctor’s fees often go to pay for their education and not ours, isn’t it?

    Very good post and EXCELLENT library advice! Got a daughter who is a librarian and she starts on her MLIS in a month or so. Libraries are vastly underutilized and your recommendations are spot-on.

    GO US!! 🙂

    • Melissa Travis says:

      Thank you so much for writing in! I always adore your comments. And congrats to your daughter going for her MLIS! It is a great field to get into!

      Been slow to answer, been packing for a big move!

      Keep writing in!!! You rock it hard!
      xx
      Melissa

  3. Lynn says:

    Melissa — Excellent, excellent article, full of great information that even those of us with PhD’s & computers often forget.

    I just had one teeny-tiny thought to add: When your doctor says “you can look it up on the internet”….ask her where she recommends you look. Remind him that there is a *whole lot* of misleading or outright *wrong* information out there. I would guess that most Drs would refer (generally) to cdc.gov or webmd.com, but they also should have a site they prefer for the particular disease, illness, or condition you’re talking about. Like if it’s a Lupus Issue, maybe lupus.org is better than a rheumatology website.

    Just my 2 cents,
    Thanks!

    • Melissa Travis says:

      Hello Lynn,
      Ohmy- Thank you for writing in with so much extra good advice!!! See – it takes a village of us to take care of each other!!! You rocked it hard core!! Perfect additional advice! Muah! *kissing fingers*

      Slow to respond this week b/c of a big move to out of state… Keep writing in with your brilliance. We need it.
      much love!
      x
      Melissa

  4. The Hippo says:

    I love the tips! And what great advice on different ways to find your own information!! I’d never think to go to a university where I wasn’t a student and try and use their library!

    This may all be old hat to many of you, but here’s some stuff I’ve learned from going to doctors both for myself and with relatives/friends, on how you can start more of a conversation and (hopefully) get your doctor to talk to you

    1. Even if you’ve no idea what’s going to happen at your doctor’s appointment (and so are not going in there prepared with a list of specific questions) bring a pad of paper and a pen/pencil to your doctors’ appointment. Not only can you now write down the scary long words you’ll need when you go on your joyous (not) research adventure, but many doctors will actually TELL you more and in more detail if they see you’re going to write things down.

    2. If you HAVE got questions in mind, do write them down! Doctor’s visits are stressful and you may forget half of them once you’re in there being poked and prodded! And your doctor may

    3. If you’re going to a particularly stressful visit, and if this is at all possible, bring someone WITH you! They can help by remembering details for you, doing the writing down so you can do the talking, and by just plain being a second (possibly less anxious!) brain to think of sneaky little detail questions you forgot to ask so you don’t need to chase your doc down later!

    And finally when you do follow dear snark’s research tips, or otherwise find your own information on your condition, new treatments, etc etc–BRING IT BACK with you to your doctor! Print it out or bring along a website or name of an author or article. See what they know about it and what they think of it. It may be that you’ve found new ideas that they’ve not heard enough about yet and you can spark their interest in something new and helpful! Or it might be something they already know about and have a considered opinion on that they can share with you.

    Hope this is helpful to anyone!

    • Melissa Travis says:

      Thanks so much for writing in!! I love your added input! Yes- I love the idea of printing out and bringing ideas and web information to your doc to see what they think as well!! In addition to your other ideas and tips- this is especially important – that way we’re not just “doing google” for ideas.

      Brilliant stuff!! Thank you so much for commenting! Love it!

      Come back and write in more!!
      x
      Melissa

  5. Maria Minno says:

    Fantastic article! Thanks.

    • Melissa Travis says:

      Dear Maria-
      aww shucks! Thank you so much!! You are too kind – so come back and comment away and give me any ideas or questions for future columns!!
      x
      Melissa

  6. Teresa Tulipano says:

    Thank you, thank you, thank you!

    I have been having a hard time dealing with the vast amt of research that I need to do, along with the many, many doctor appointments I have to schedule and keep track of (none of the doctors talk to each other, BTW, and I have to force them to share their info frequently) and somehow keep everything straight in my head and to know what I need to ask which ones of them. I’m pretty lucid, although fatigued, and I’m really having a hard time managing it – I cannot imagine anyone who was feeling worse being able to take it on.

    I have been wishing for the medical system to change in many ways, but the key thing I’d like is for someone (a general practitioner, maybe? or primary care physician – a medical fairy godmother/father) with a medical degree to be the project manager for the treatment of my illness(es) and for THEM to be in charge of all the facts and next steps and for THEM to coordinate and help me muddle through and to educate themselves about what I need.

    But my wishes do not seem to come true, although my primary care doc would look pretty cute in wings and a wand…..

    • Melissa Travis says:

      Hello Dear Teresa –
      Thank you so much for writing in!! And YES – YES SO MUCH to your input!! You know the crazy thing is – YES- wouldn’t it be nice to have someone coordinate for us!!! The only thing i FEAR like crazy is getting categorized as “this person has x syndrome” and so they stop looking for anything else…

      But as far as when we are really ill and have multiple doctors – YES why is it we have to carry our own charts and fax information in and have to wait on everything??? WHY IS THAT? Why? Sooo frustrating. Maddening even.

      I could watch them in wings for sure- if they made my life EASIER.

      xoxo
      Melissa

  7. Nicole Wells says:

    Dear Melissa,

    This is amazing and useful info, and I will definitely try to make some of this work for myself. Google has been my best friend, and yes, there are times that I feel my research runs into a dead end.

    Or, what we can do is kidnap a hot doc, internist, what-have-you, tie him up and MAKE HIM give us answers. I’ve reached the end of my rope, and will be taking drastic actions in the foreseeable future…

    xoxo,

    Nicole

    • Melissa Travis says:

      Dearest Nicole –
      You have the most brilliant idea so far — GONE WITH GOOGLE – GET THE ROPE!!!
      🙂

      Adore you so much!!!
      xo
      Melissa

  8. Great post, Melissa! I am always on Google Scholar doing research and it helps SO much to know what I’m talking about when I go to a doctors appointment. My endo really respects me for knowing about my disease and it makes my appointments with him so much more productive. I don’t know what I’m going to do when I’m no longer a student and lose access to so many awesome medical journals, but I think I could get on board with Nicole’s idea.
    😉

    xoxo,
    Joanna

    • Melissa Travis says:

      Dearest Joanna,

      Here here — I think as long as there is a willingness to be an educated and informed patient there will be a way to make it happen. But I am NOT lying about how frustrating it can be… especially if you have multiple intersecting illnesses… Meanwhile – YES – enjoy those academic library privileges while you have them!

      You’re a doll – LOVE your column this week!!!
      xo
      Melissa

  9. Lolly says:

    Great tips Melly mel.

    • Melissa Travis says:

      Dearest Lolly-Lol,

      I’ve been packing to move and have neglected you far too long. How you’ve been in my heart though. Thank you for your kind compliments. Adore you so much!!
      xo
      Melissa

  10. Greg Smith MD says:

    I am so enjoying your writing! I’m sorry I have just found it, but it is a welcome addition to my ongoing education as a doctor who sees patients who suffer from and live with acute and chronic mental illnesses. Your intelligent and down to earth commentary on the reality of the doctor patient relationship is something that I wish they would incorporate into medical education for all new doctors. Keep up the good work, and I’ll try not to steal too many of your good ideas!! 🙂

    • Melissa Travis says:

      Dear Dr. Greg,

      Thank you for your kind compliments. I’m the biggest fan of your writing as well! I cannot tell you what kind of dream it is for me to add to the dialogue and conversation about doctor patient relationships in a meaningful productive way. I can only see myself giving workshops to med students someday…. calling it – an added perspective… If I can help patients see what doctors see, then I can help doctors-to-be see what patients see. Perhaps it is a book and an Oprah tour instead.

      Thanks again – for the genuine encouragement!!
      much love,
      Melissa

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