"Diagnosis seeking" and other comments

I've run into quite a bit of false logic, false rumors, and false assumptions with my illness these past 5-6 months.  I swear sometimes people do really forget to think about what they're saying before they speak.  Sometimes when that happens it is so hurtful that my gut says smack their heads together three-stooges-style, but that would only make me feel better in the short term and wouldn't actually improve the situation. 

There is usually some semblance of truth to what they're saying, but they're missing some vital points and thus their judgement is skewed.  One false assumption or idea seems to lead to more, so let us discuss a few examples to try to fix that: 

Doctors know best.

How wrong this is; let me count the ways.  I know this causes cognitive dissonance for many, but doctors are human too.  In general they know a lot about SOME things.  Each doctor is different, and sometimes they forget that each patient is different too.  Some doctors don't take the time to even listen to your complaints.  Others hold true to the "when you hear hoof beats think horses, not zebras" mantra even when they should be looking for zebras.  Others are good listeners and know how to do their job but also cannot know everything there is to know about every organ and system in the body.

Seeking a diagnosis is bad.

If you're sick and you want help, there is NOTHING inappropriate about finding that help. And really, who in their right mind wants to go through tons of testing, time, headaches, stress, travel, (don't forget doctors too!) and spend tons of money to be told you need brain surgery or life-long hormone replacement? 

As an example, I was asked by an OB why I was having non-stress tests weekly after about 32 weeks of pregnancy.  I told her that I was considered high risk (I have high cardiac output and am on medication to slow my heart rate), it was standard for my pregnancies, and that the midwife had ordered them at my last appointment.  She told me I was not high risk and asked why I wanted to be!  There are so many things wrong with that statement, but let us address the question.  I ended up being induced at 40 weeks, just a few hours after being diagnosed with Oligohydramnios by a more conscientious OB.  There was no "wait and see" option because it was so severe, and I ended up with an emergency cesarean.  Did I want to be high-risk?  HECK NO!  But I WAS high risk and wanted to be monitored carefully so that my baby and I could be safe.  The risks of oligo are IUGR (growth restriction) and stillbirth because oligo itself is caused by the baby not getting enough nutrients and blood flow from the placenta.  Sounds pretty risky to me.  My husband is convinced that had the first OB taken things seriously and been more cautious, they'd have caught the oligo earlier thereby allowing more leeway with an induction and hopefully avoiding the painful, lengthy recovery from a cesarean.  I hate to think what could have happened had the second OB not monitored us closely.

What sick person wouldn't gladly put forth effort and money to get well sooner if they could? Don't forget that this is life; you can't get time back.

If a local MD can't diagnose it then you must not have it.  (Add to that, if you have to travel to get a diagnosis, the doctor must be a quack who is only after your money)

You shouldn't have to travel to see a specialist and get diagnosed, absolutely! But the reality is that most people DO have to travel to see a specialist for rare, hard to diagnose diseases.  My endocrinologist has the CV to beat all CV's, meaning his medical "resume" is quite impressive --he is no fly-by-night, make-money-off-a-sucker doctor who'll hand out a diagnosis to line his pockets. (This was my mother's concern) He IS an expert in this field and deals with the most difficult of cases. Heck, he writes the textbooks and studies these other doctor's learn from.   Wouldn't you think going to a specialist would, in theory, make it HARDER to get a false diagnosis than an MD who hasn't treated the disease before, doesn't know how to test for it, etc?

You can't be sick because you look normal.

I wish this logic held true...then just by dressing in expensive clothes, I'd be rich! 

My fourth grade teacher learned this lesson the hard way when I asked to go to the bathroom because I felt sick.  She wouldn't let me.  Not only did I get to go to the bathroom in the end, but I got to go home for the rest of the day, and my classmates got the pleasure of a freshly-cleaned carpet. 

Sometimes sickness can be quite visible, sometimes people wallow in their illnesses (using a minor head cold as an excuse not to do anything they don't want to do), sometimes illnesses are known only to those that suffer, and sometimes those suffering do their best to push through it and live life despite illness, giving the false impression of wellness.

I look like my usual self, aside from being a bit more pale or flushing when I've overdone it.  Even when I'm in the middle of what I call a "crash" and can't physically do anything more that day (holding my head up becomes difficult), I still *look* pretty normal.

Didn't we all learn early on:  Looks can be deceiving.

Everything can be cured by exercise and diet (or the converse, everything is caused by poor diet and a lack of exercise).

I've come to realize that even IF someone's sickness is due to their own actions, judging them for that, refusing to help when they're in need, or putting them down because of it helps in no way at all. You're sick. You caused it. Let me make you feel worse than you already do! There's charity for ya.

Genetics, accidents, and life just happen.  There is much sickness caused by poor diet and a lack of exercise and taking care of yourself can help you avoid some illnesses and cope better with those you can't avoid.  The conditions I am being tested for are not caused by a poor diet or lack of exercise. 

I actually got sick while being quite active (singing and tap dancing in a musical while 18 weeks pregnant), and my first obvious downswing that I remember in my health before that was at a time I was doing about 4-6 hours of karate a week (which burns 750 calories an hour, FYI) and started eating an organic, whole foods, low-starch diet that was very high in nutrients in an effort to be healthier.

You can decide to feel better.

I can decide to feel better but if my body isn't well, it isn't going to work.  Right now if I "fake it till I make it" I end up pretty much bedridden for a couple of days...it just isn't worth it.  I've been forced to be more of a realist in my day to day activities and health, and an optimist in my future, diagnosis, and treatment.  I WILL feel better some day, I'm just not there yet.

You're just lazy, not sick.

It is wrong that being sick should make someone feel guilty; it is even more wrong if our actions or comments encourage that feeling.  I hate not being able to do things and feel lazy (in the derogatory sense) when I can't do things even due to sickness.  It is bad enough that every time someone does come to my house or while I'm at church, I do more than I should and can end up exhausted for days. I've always pushed through to get the job done and it is a daily struggle for me now that my body doesn't cooperate and a good night's sleep won't solve everything. Everyone likes the opportunity to relax sometimes, but trust me it gets REALLY boring, the kids turn into Bedlamites, and your house turns into a garbage dump when doing nothing (even for good reason) becomes the norm. 

My guess is that most people haven't thought about what they're really saying, or they have some other emotion-based concerns and haven't yet been able to verbalize (or realize) them for whatever reason.  I think part of it can be that those who care about you honestly don't want you to be sick.  They may try to blame your illness on something they see as safer or more easily fixed (like diet or exercise) or even suggest that it is all in your head (thus there isn't really a problem).  Patients aren't the only ones who dabble in denial.  There are even others who try to be optimistic to the extreme, downplaying the reality of someone's very real struggles or not allowing them to talk about their illness or emotions.  And yet more hurt comes from people simply not understanding what someone is going through...so please, just ask! 

Before you make statements following any of the above threads of logic, ask yourself if you really think the person you are speaking to or about would seek attention in that way? Are they that illogical that they'd beat their head against that brick wall without a reason?  Is that something a lazy person would do?  Is not doing your own housework a good way to get your house cleaned?  Are they that stupid? Are they that crazy?  If they could decide to make it go away, wouldn't they have tried that by now?  Is that really what you think of them?  Is that what you're really trying to say?  Are you wanting to show love and support, or are you trying to offend? 

While we often realize you don't mean what you say, it still hurts...and we've got enough of that already.
 

This post was inspired by a thread on the Cushings-Help website.  Someone was feeling unsupported by their family and the lack of logic (and charity) behind it got me on a roll...