Mental Health Post #23: Advocacy    

More than a decade ago, a friend of mine received a tough diagnosis for their baby.  It wasn't immediately life-threatening but it was certainly severe and looked to impact their daily lives in a very visceral way.  Not too long after the diagnosis, this person discovered a new treatment for this diagnosis that was at the time experimental.  The treatment was completely non-invasive, took only a few treatments over a couple of days,  and likely would completely cure this diagnosis for several years, if not forever.  This person talked to more than five medical professionals, showing them the data and the relevant studies.  All but one brushed it off and said they would not be willing to write a reference for the insurance appeal (as most of you probably know, insurance as a general rule will not cover treatments that are still experimental).  After two appeals to the insurance company, this person was completely blasted emotionally, but persevered because that's what you do for your helpless baby.  They were willing to figure out a way to pay for it out of pocket, despite being very young and new to the workforce.  Thankfully the third appeal went through and they were able to fly to the facility and have the treatment completed.  That baby is thriving and has no further problems thanks to this treatment. 

This story is not actually to bash on the complicated bureaucracy of insurance companies.  What I actually want to get out of it is how dedicated this person was in seeking the best possible care for their baby.  How they found the optimal treatment, and kept getting up to fight for it even when their mental health was getting low, and people kept saying no.  In this story, you are the baby.  And you are the parent.  (Sorry, did that get too Predestination?...  ;)  You deserve to receive the best possible care.  You are necessary and important and anyone that says otherwise is wrong.  Including if your own mind says this.  Remember how we talked about the big LIE of mental illness?  That things have always been this bad and will always be this bad?  Let me add another dimension to this LIE: that they are and always will be this bad because you are worthless.  This is the BIG LIE.  Not only are you important and full of worth, but you are always your own best advocate.  Anyone with a chronic illness can tell you this: you know your body and your life best, and when you are able, you are the best possible person to fight for the best care for them.  Enlist the help of your support group and where possible, advocate for others with similar challenges.  But please don't feel shame if you aren't capable of discussing your mental health challenges at length.  We all do what we can when we can. 

You will face a lot of roadblocks.  If you aren't already aware, there is a stigma about living with mental health issues.  (See my previous post.)  I've had a lot of people ask over the years how they can help, both personally to me and in general concerning mental health.  The most important thing I think is to normalize talking about it.  This can be done with tact and without disclosing other people's private information, but it won't be without discomfort.  It is pretty hard to do things outside of the social norms, and talking about mental health in an open way is still not done with regularity.  Along with this, I want to super encourage those who do not struggle with mental health issues to help shoulder the load.  It can be incredibly difficult for someone with a mental health disorder to talk frequently and at length about their own personal vulnerabilities--if you want to help, please do so by committing to be a safe and open person that others can come to to talk about those things.  Educate yourself about resources and keep an open mind when dealing with others who don't act like you expect.  Be forgiving and tolerant as people learn how to manage their own care.  We all have to start somewhere and learning to manage disease doesn't happen overnight!

Photo note: he feels like laying on my head is the best possible way to show his deep and abiding love for me...  ;)