Support Invisible Diseases Narcolepsy

Support Performers with Invisible Diseases

Support Performers with Invisible Diseases

I belong to a few narcolepsy support groups on Facebook.  To say the very least, it has been informative and very interesting.  It also has given me an entirely different viewpoint on those struggling with ‘invisible diseases.’

Suck it Up Buttercup

You see when we were kids I remember my Dad always saying to us, suck it up buttercup.  He said you can will yourself healthy.  You need to think positive.  He would give the example that in 40 years he can only remember having one cold.  You can think of my Dad as the evangelist for the ‘laws of attractive – (LOA)’ before that was really a ‘thing’.  And I have to say, in some respects he is and was right.  If you are in a crummy situation and you focus on how crummy it is, well it is and stays crummy.  Yet, if you feel like crap and you get up and take a shower and play with your kids to whatever extent you can, well then at least you feel a little less crappy.

You Get to Stop Sucking it Up at 50

Then he turned 50.  He is still a super positive guy.  Yet, he has a seriously bad heart.  He is now living with his sister and her husband and he is not able to work.  He cannot will his heart better. But, he is still smiling and at least the days are a little less crappy than before.

Facts are Facts – Buttercup

Yet, the fact is that my Dad still has a heart problem.  He cannot will the heart problem away  He cannot stop taking life saving medications.  Maybe there is some type of natural solution.  Yet, somehow the natural solutions are more expensive that some of the copayments for medicine.  He could try a chiropractor.  Maybe he could try a herbalist.  Or he could try a million other things.  Yet, those things may or may not work.  Just as medicines sometimes help and sometimes done.  And whether or not the big pharmaceutical companies are getting rich or not doesn’t negate him needing these medications.

Narcolepsy and the Law of Attraction

So, full circle to the narcolepsy and LOA.  This very well meaning man who is narcoleptic has found a few natural solutions that work for him.  THIS IS AWESOME!  He feels that the law of attraction and eating healthy is going to cure him.  This is also great.  He has someone perhaps coaching him on how their beachbody diet or their essential oils are going to cure him.  I am truly truly happy for him.  And he feels that medicine and pharmaceutical companies be damned as he has found the solution.  He followed this up by a few uninformed facts or on a more positive note some observations on how this new month of this lifestyle is the cure for this disease.

Some Medicinal.  Some Illegal.

Well, that is all nice.  But, many of the folks on the board have been suffering with this for 40 years, 5 years, whatever.  We have all tried every single thing out there.  Some natural.  Others medicinal.  Still others, illegal.  Often we come here to commiserate with others that get what we are saying, and well sometimes that comes off as a bit negative.  Yet, the vibe is not meant to be negative, but supportive.  And it is great that he has some new options.

Will Away Your Autoimmune Neurological Disorder – Sure …

However, telling all these folks that they can CURE something with some happy thoughts or will away a autoimmune neurological disorder is pretty… hum … how do I say this.  Well, it wasn’t received very well.  You see, we get enough of that crap from everyone else in the world telling us that we are just tired and everyone is tired.  We get enough of that crap from family and friends that don’t understand.  This person, well he is supposed to understand.  So telling us we are all stupid for doing what we are doing is really just another blow to our already deflated self respect.

We All Struggle Thinking We ARE …

You see, we all also struggle with thinking maybe I am just lazy.  Well maybe I can just suck it up.  Maybe I am doing this for attention.  Maybe everyone else is this tired too.  I know I got a real diagnosis for a real doctor, but maybe …  You see we don’t need those that are supposed to understand our invisible struggles to join the bandwagon of good intended uninformed folks about how we can just power through being tired.  We just don’t.

Narcolepsy – Autoimmune Neurological Disorder

For those of you that care.  Narcolepsy is a autoimmune neurological disorder.  There is a depletion of hypocretin in our brains.  This depletion starts screwing with our sleep wake cycles.  A normal day for a narcoleptic is what it is like for someone else that has been sleep deprived for 72 hours.

We Don’t Look Sick – But We are Being Tortured

So, while we do not look sick.  While we just look tired.  We are not just tired.  We are being tortured due to lack of restorative sleep.  Yes, I said tortured.  You know they use sleep deprivation as a torture technique right?  The side effects of this prolonged torture result in memory loss, slow or not healing, inability to concentrate, inability to stay away even in dangerous situations, obesity, etc.  Like this is bad stuff ok.  And each person with it has different symptoms, reacts different to medications, and is stumbling through their own journey the best way they can.

You Don’t Know What Journey Others Are On

So maybe this isn’t a little lesson, but a big lesson.  YOU DO NOT KNOW what others journeys are.  You do not know what illness they may or may not have.  We cannot will away narcolepsy or autism anymore than you can WILL BACK AN ARM.  Yeah, think about that guys.  So, while I am truly one of the most positive folks you will meet, and I still try to keep the half-full attitude as often as I can.  Well, not everyone can ok.  Not everyone can decide that today’s torture isn’t so bad so they will put on a happy face.  And well, how dare you or I judge them.  This goes for any invisible illness.  Anxiety, Depressions, Narcolepsy, Autism, … you get the idea.  Some support goes a long way.

Stop the Judgement

So, yes – please do give positive thoughts and support.  Sure, give some new advice on the latest thing you read that can maybe help.  Absolutely show support and do your best to understand.  But please guys, stop with the judgement.

LOA Isn’t Going to Regrow My Brain People

Please stop with the laws of attraction are going to grow the leg back or get the hypocretin cells to regrow in my brain.  Science isn’t there yet to support this theory.  While I actually am a pretty faithful person, I am sure “just” praying ain’t gonna do it either ok.  God gives us tools to help ourselves.  Right now some of those tools are medicine.  Maybe in a few years there is a new way to grow or create new cells.  But today, there isn’t.  In conclusion, I ask you to put that little judgey judgey part of your personality on the back burner and just try being another human that relates to another human.  After all, we all bleed red right?

 

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