Working on Standing Up to Be Counted!

        Some perspective to be added to that expressed all across the 'net in behalf of those who need others to understand.  Not chewing anyone out, nor trying to give tickets to any kind of guilt trip; just trying to do my part to help spread understanding, empathy and compassion to this world.  As usual, I've no idea what will be falling out of my head and into this post, but whatever it will be, I hope someone can benefit from it.

        I recently read an article by Carissa Haston, someone who understands chronic illness through her own experience, and who has shared a plea to those who do not understand the need to not get used to the fact that someone has a chronic illness, and then forget.  It is one of many powerful messages out there aimed toward this end, and in the early morning hours, as I read the words of this strong, brave soul who truly knows from experience, I was moved to tears by the fact that I understand, too well, myself.  It was like reading words I would say, if I'd the courage to stand up and share them, too.

Because I understand what it takes to stand up and be counted,

and because the whole point of the PB Project

is to help others know they aren't facing challenges alone,

I want to thank this brave soul, and the countless others, 

and stand with them, now, in my own way.

        I have a lot of diagnoses, and I have a lot of treatments for them, as well as treatments for the side effects and complications from the treatments for my original diagnoses.  So many, in fact, that it would take an entire, rather long post just to list and explain them all, and while I'm willing to discuss them for educational and empathetic purposes with those who ask, I'm actually a fairly private person, so haven't come up with the courage to just throw the entire list out there, all at once, like a resume of personal, internal catastrophe.  

        When I go to new doctors' appointments, I am able to skip the hour it takes to fill out much of their paperwork (and ask for several, other sheets of paper) by handing them the paper I keep in my wallet to make a copy, typed in 8-pt font and on both sides, listing my diagnoses, my allergies/sensitivities, and information regarding my insurance, primary care doctors, and other contacts.

(PSA: I'm tellin' ya, it's good to have, folks, even if all you have is your contact information in case of emergency, so if you're unable to give the information in the moment, they can find it and get you appropriate help!)

        To be clear, while one of my diagnoses is also gastroparesis, or the paralysis of the stomach muscles which leads to a number of complications, Ms Haston has unfortunately experienced it in a much more extreme set of circumstances than I have, thus far.  Even with all of my dysfunctions, injuries, and chronic pain due to defective and degenerative collagen; autoimmunity problems; all the related complications; and then some mental, emotional and mood issues such as Bipolar Disorder and anxiety disorders; then the side effects of medications and such... I am still grateful that the circumstances around my illness have not yet required such extreme measures as organ removal, tube or IV feeding, or extreme risk of early death.  I have become rather well-educated regarding a number of physical and mental illness issues, and have been trying to find people who understand things like the ones I experience, partly for my own sense of self and connection, but also to help others in their searches, as well.

        Reading her articles, and others like them, has inspired and empowered me to feel as though my voice also needs to be raised, so to speak.  How can I process and manage my grief and fully embrace my illness and resulting disability, and feel connected with others who do as well, without allowing others to know that I am working on trying to do that, myself?  How can I help the world to know and understand these things about which I had never heard, before I was diagnosed and had to actually do my own research to figure them out, if I don't have the courage and strength to get up there and be counted?  How do I even manage to feel completely true to the spirit of the PB Project itself, if I am too afraid of my own experience and the stigmas attached to such things?

        That, right there, is the trouble, my friends.  Stigma.  A nasty, little word.  It is the source of pain and fear that accompany a sense of shame for having something we cannot help nor stop, that we and/or others do not understand, and contributes to the creation of an abyss of depression and despair.  It happens with mental/emotional and physical health diagnoses, and it induces silent hiding of who and what we are and experience, simply because of the way we believe others will treat us, if they knew.  It is the very reason why people like Ms Haston, and others like myself, need to come out of the shadows and connect with each other, in order to create a web of help and hope, and help educate others who could help strengthen and empower us as well.  

        Another issue I have found with this idea of trying to speak out about one's illness or disability, is that even in the experiencing of these challenges, one may be faced with the frustration, impatience and lack of empathy which others (and oneself) have with regard to one's plight.

• "Oh good grief, are you ever going to just stop already?"
• "You're just milking the attention and generosity of others, now!"  
• "When are you going to stop being lazy and get on with your life?" 
• "You know, everyone has problems, so why do you think you get to have a free pass to play sick all the time?"
•  "If you would just ___, you would be healed/fixed/better/etc.."
• "I've had enough of this."

       ...

• "I should be better by now."
• "Am I really so sick that this is all/the best I can do?"
• "I shouldn't be so lazy.  I need to get on with my life, already!"
• "This is so unfair to everyone around me."
• "If I could just ___, I'd be better already, but I'm just too ___ to do it right."
• "I feel so guilty."

        ...

        My experience is not exactly like your experience.  Our experiences are not like anyone else's.  And yet, there is a sense of empathy and understanding which we can create by embracing our own circumstances, and sharing them with others.  That is how we defeat stigma, reduce the strain of trying to cope - either as one with the illness/disability, or one who loves and cares for someone -  and develop a sense of belonging and peace, despite our challenges.

        Let's do this, my friends.
        We can totally do this.
        We're in this together, after all.

        Better days ahead, my friends!