Paul's Heart

When Those Closest Do Not Even Get It

When someone gets diagnosed with a serious illness, such as cancer, initial feelings for those around the patient, are often shock, fear, concern, hope, and encouragement.  In too many cases however, these feelings often fade or are extinguished as quickly as a match’s flame is blown out.

And just as when that match is blown out, it leaves behind an awful, sulfur smell.  Of course we do not expect a match to stay lit forever.  And nor should we expect many who we are acquainted with to carry the concerns and encouragement for a successful path in dealing with our serious illnesses.

The truth is, we do expect, and we should expect, those closest to us, such as our family, closest friends, and perhaps even co-workers, to continue to be concerned and offer encouragement.  After all, these are the people that patients spend most of the time with, witnessing all of the stressful moments, struggles through treatments, and the fears of the possibility of not reaching remission.  It is a no-brainer.  If the patient is your spouse, parent, child, sibling, best friend, close co-worker, you are expected to be there no matter what.  We need you.

Then how do we go from them being there for us, to not being there, and/or betrayal?  Wait.  WHAT?  Betrayal?

That’s right, I said betrayal.

Being there goes without saying.  Your loved one or close friend, likely one to even be a medical advocate or proxy for you, stands by you no matter what.  Their only concern is helping you get through this awful journey that you were forced to take on, through no fault of your own.

And if you are lucky, this is exactly the situation you have had, or someone you know may have experienced.  The last thing anyone would expect to happen to a cancer patient, or anyone facing any other serious illness, is to get “kicked in the teeth”, “punched in the gut,” whatever expression you want to use, while going through something so difficult, often times possibly fatal.

It happens more often that many may be aware of.  And unless you participate in many of the forums as I do, you may be unaware just how often this occurs, or how serious it gets.  Experiencing this behavior myself, on numerous occasions, I have seen countless others, even as they faced death, be treated just as horribly.

As I said, there are two types of this unacceptable and inexcusable behavior.

The first, if you can believe, develops as a “jealousy.”  That’s right.  The cancer patient must be getting some special treatment that is not enjoyed by all.  An example, back when I was diagnosed, many co-workers thought I was given special privileges for time that I would miss from work.  It never happened.  I lost income from the time I missed unless I used sick pay.  During my survivorship days, where I have struggled with my health from the treatments thirty-one years ago, physically unable to do many of the things I once did, and protected by the Americans With Disabilities Act, it was common for co-workers to bitch that it was not fair, that I got paid the same rate, and was unable to do every task that they, being healthy were expected to do.  Imagine that, jealous of the guy who has cancer, or just had open heart surgery (my list goes on).  I challenge one person reading this, who would jump at the opportunity to switch places with me.  No, seriously, I would love to play baseball again, or go whitewater rafting or skiing like I used to.  Come on!  Any takers?

But the truth is, this behavior is all too common, and unfortunate.  There is not one person I know who asked to be challenged by a battle with cancer.  We are the one being inconvenienced.  You get to go through your life all happy and healthy.  The attention given to a cancer patient eventually ends up too much for many to accept.  Even vows of “in sickness and health,” no longer matter.

Sometimes, the “loved ones” will attempt to pull attention away from the patient, gathering pity for themselves to make them more of a focus.  “I can’t believe this is happening to me, having to deal with this.”  “I can’t get anything done I want because everything revolves around her.”  The comments go on.  The most nauseating comment I have ever heard, “I can’t believe I am going through this.  After they’re gone, what am I going to do?”  Seriously, if you are in a situation of losing a loved one, and those words leave your lips, the loss of your loved one is the least of your self-absorbed problems.

But hey, once a person is cured, all is good!  Forget anything happened, right?  Let’s move on!  No more pity.  In fact, “it” shall never be mentioned again.  Of course that is a feeling that both patient and caregiver clearly hope for.  But there is a reality.  It does not work that way.

Ask any long term cancer survivor.  Many of us treated decades ago, were done so experimentally.  Short term, doctors knew treatments had a good chance to work.  Long term, they had zero idea at what cost.  Well, many doctors now do know.  But the problem, remember how concern and empathy changed when we faced our cancer?  This attitude returned in a much more awful way.

“I don’t understand, you were cured!  This is bullshit that we have to keep going through more.  Your cancer is gone!”  Many of my fellow survivors will agree, they have heard something similar.

While family may be the same, spouses may be different, different co-workers will be likely, the responses by all are likely to turn darker, unimaginable to come from people we thought cared.  Betrayal.

It is hard enough for us long term survivors to even find doctors who understand or know about our issues.  We are happy to even have a doctor with an open mind, willing to seek outside help.  Many see a doctor, with a definite issue related to treatments, only to be turned away because the doctor is ignorant in our treatment histories.

Even that could be understood to a point.  If it was not covered in medical school, which is was not until a decade ago at the least, how could a doctor be expected to know, unless they attend conferences or continue their education?  I am blessed because I have a doctor who does just that.  But the majority of doctors I have faced, have had no idea.

But a reluctant family member, friend, or co-worker who has had enough the first time if they were around for that, and if not, may not accept that there is even any proof that anything was ever wrong in the first place.

Two things are likely to happen.  Get the situation corrected.  It could be a surgery, perhaps medications, whatever.  Good, all better.  Move on.  You are good to go.  Denial.  Cancer patients now face lifetime surveillance to follow up for potential long term complications.  And a Hodgkin’s Lymphoma survivor treated in the 20th century is likely to have a long list of issues that will never be recovered from.

Again, hard enough for the patient to deal with, those around the patient, push back.  “It’s not fair!”  “I have given enough!  It’s time for me to be able to enjoy life!”  “Why can’t they just get over it?”  Or, “they’re better now!” and settling for the next shoe to drop whenever it does.

Then it comes, betrayal.  It may seem like denial, but it is betrayal, because the loved one actually refuses to believe there is anything wrong with the patient, actively participating in efforts to smear the patient, demeaning the patient into someone just pathetically looking for attention.  The word “lazy” will also often get tossed around.

Many of us have been in this situation.  It is horrific.  We have enough on our plates, including fighting against doctors who may not have the knowledge or will, than to fight our caregivers as well.

In a perfect world, people would simply just care when another is ill, and that is all.  Not worry about what perks they are missing out while they get to enjoy good health.  Not to be resentful because a life-plan did not work out the way it had been dreamt.

In a perfect world, if you are reading this, and this has not happened to you, then I, and everyone else are happy that you have had support that has at the least, been never ending.  Strenuous is one thing.  But if it has never waivered, then you are one of the lucky ones, and I could not be happier for you.

And if you have gone through behaviors like this, you are not alone.