Going through something medical brings out unsolicited advice in droves, doesn’t it?  The sentences all seem to start the same way, “I knew someone exactly like you.”  Or, “My friend’s, cousin’s, neighbor’s, nephew-in-law went through the exact same thing.”  Then goes their version of your “exact” story followed by, “What you should do is…fill in the blank.”

People Mean Well

Let’s be honest, people mean well and are (usually) coming from a good place when they offer up advice.  The thing is, they aren’t always so great at presenting it.  I know I’ve been guilty of it myself.

Someone starts to tell you a story and, in an attempt to relate, you immediately think of a similar situation.  And it’s not just when someone is sick.  Engaged couples, new parents (heck, any parent), even someone starting a new fitness routine.

The issue with this isn’t the intent.  Most of the time it’s how people go about it.  They hear a small snippet of what you are going through and think of someone they know or have heard about and immediately become the expert.  “That sounds exactly like so-and-so and all they had to do was such-and-so and everything got better!”  Or, one of my favorites as a liver patient, “You should take milk thistle!”  Yep, all things liver can be magically cured with milk thistle.  Including hereditary disease, rare diseases, and acute liver failure.  If only doctors were in the know!  Are you sensing my heavy sarcasm here?  I have opinions…obviously.

What You Should Do

First, there is a quick comparison of your situation with someone “exactly” like you.  Then, these conversations usually progress to what you should do.  “You should tell your doctor you need XYZ.”  “You should be tested for this or that disease.”  And, one of the better ones, “You just need more rest.  You should get more sleep.”

Again, people generally mean well, but they haven’t thought through what they’re saying.  Geez, I hope I’ve refrained from using the dreaded “You should” in my blog posts so far.  

We are all going to hear advice that doesn’t apply or is not solicited and most of the time that’s not a big deal.  We can brush off unsolicited advice and move on.

Mr. Graft Diaries has an analogy for this.  Imagine advice like a chicken wing.  Someone gives you a wing (advice).  Not all of it is going to be tasty (useful).  So you eat the meat (the good stuff that applies to you) and toss the bones (all the stuff that has no bearing for you).

The problem (at least for me) is when people present it as “You should.”  That particular phrase comes off as bossy and as though they know what’s best for you.  I know I have been guilty of this myself.  I hear it start to come out of my mouth and start backtracking immediately (at least I hope I do).

Someone Exactly Like You

When it comes to advice, there seem to be many people who are exactly like you.  Or someone who has gone through the exact same thing.  Except, nobody is the same or has the same experience.

Let’s say I went out and found five other liver transplant recipients.  And suppose those recipients had situations that were the same as mine in every way possible.  Our experiences would still be different.

The way I manage pain, the way I compartmentalize, the way I keep color-coded graphs of my blood work (What?  That’s not weird at all!) will all be different than somebody else.  There are no two people who are exactly the same (thank goodness!).

In that same vein, no two people with Wilson’s Disease, Diabetes, or A1AD will have the same symptoms, medications, or treatments.  That’s the beauty (and perhaps the challenge) of being individuals.  No two people are the same physiologically, emotionally, or otherwise.

What to Do With All That Comparison

As human beings, we compare ourselves to others.  We are always looking to define and reflect on ourselves.  One of the easiest ways to do this is by seeing how we stack up to the people around us who seem similar.  I would venture to guess this is also some deep-rooted survival mechanism.  “If I’m stronger, smarter, faster, I am less likely to get eaten by a bear than that person over there who is similar.”

Comparison can have its advantages (please see bear survival reference above).  But, it can also be destructive.  It can damage our self-worth.  It can take us down a rabbit hole of insecurities, or cause us to take risks that could be detrimental to our health.

So when someone we care about (or even barely know) compares us to someone else, we immediately take heed.  There may be something helpful we can take away from this comparison and subsequent advice.  On the flip side, that comparison and advice could be a bunch of bologna and we shrug it off.  Either way, we have to find the meat and toss the bones.  Speaking of comparison, does anybody else sing the Oscar Mayer jingle to spell b-o-l-o-g-n-a?

Try Not to Complicate Things

I see it every day on Facebook.  Someone gets on a transplant group and asks a question.  What should they do about a symptom they are experiencing?  Which medication should they take?   What does this bloodwork mean?  We can find great comfort and comradery in our fellow transplant recipients.  But, they are not our doctors.

Try to reserve the questions about your specific care for your own healthcare team.  It can be difficult to wait for answers from doctors.  But, following the advice of people on Facebook could have some negative consequences.  Besides, it can be difficult to un-learn misinformation relayed to you.  So says the person who writes a blog full of advice.

Transplant groups are great for moral support.  Talking with people who have gone through similar experiences helps us to feel less isolated in the challenges we face.  Reading or hearing the stories of other transplant patients reminds us of how different we all are and how remarkable each journey is.  Use these groups for support, not medical advice.

How to Manage All the Advice

Advice from others (outside of the advice from your healthcare team) is in no short supply.  Both before and after transplant, people will have opinions to share.  So here are a few tips to bear in mind when the advice starts coming:

• Nobody knows all the ins and outs of your specific case.  This includes doctors and nurses you may know on a personal level.  If they don’t know the specifics, they can’t know what’s best for you.
• You are an individual.  There is no other person exactly like you, or going through a situation the same as yours.
• Try to translate “you should” into “you might consider.”
• Remember people are usually well-intentioned.
• Take that meat and toss the bones.  Not everything applies to you.
• Before you start doing anything that affects your body, talk to your doctor.
• There is no cure-all (no cleanse, sleep, natural supplement, or medication will “fix” a chronic condition).

What Someone Exactly Like You Should Do

Most of the time, people share similar (not exact) stories or experiences as a means to connect.  They are searching for commonality, not trying to downplay what you are sharing.  There is never someone exactly like you.

Some people may come across as know-it-alls by telling you what you should do.  Remember that often this comes from wanting to help.  Not every piece of advice is useful.  You are an incredible individual who can take information and make a decision on your own.  What you decide you should do is always going to be better than following the advice of a well-intentioned friend or family member.