Screaming for …?

Hello my lovey doves! I apologize for not getting back here last night to write about “contentment” – as I mentioned on Sunday, I have been quite ill and very weak and it has kind of come and gone at its own “discretion” with no regard to my feelings about it, of course! At any rate, I wanted to pop in on here quickly to say that I AM (always?) TRYING TO SCREAM FOR THE ATTENTION OF “INFLUENTIAL” PEOPLE FOR HELP FOR THOSE WHO ARE DISABLED AND HAVE CHRONIC ILLNESS (especially congenitally – I do include autoimmune / autoinflammatory illnesses of most kinds in that category). I AM SCREAMING FOR THE ATTENTION BROUGHT TO THE DISABLED IN THIS COUNTRY AND HOW HORRIBLY QUIETED WE ARE AND ARE TO BEGIN WITH – HOW THERE ARE THINGS LIKE A 5-6+-YEAR-LONG WAITING LIST JUST TO GET HOUSING AND HOW THE AVERAGE PERSON WITH SEVERE AUTOIMMUNE DISEASE WOULD HAVE TO SELL BASICALLY EVERYTHING IN HIS/HER POSSESSION IN ORDER JUST TO AFFORD MAYBE A YEAR’S WORTH OF MEDICATION (AND THAT’S A “GOOD” SCENARIO …).

Lately, my “TARGET” has been Ms. Lady Gaga – if she feels so strongly that fibromyalgia is the “most painful” infliction there is, she should be stepping up to bat for those of us with severe chronic “invisible illness” and she should REALLY take off the blinders regarding the very VERY painful conditions that are out there (I have, as I have mentioned before, blacked out many times from the pain, especially bone pain; eye pain is also exceptionally severe as is “brain swelling pain” … but there are MANY more serious manifestations of Behcet’s – namely skin lesions and the associated infection and necrosis that goes with these ulcers and how I have heard that the skin grafts are the most painful things any of these people have ever encountered – and given my experiences with this disease, there are many painful things I am quite sure they have encountered!). I am not trying to go off on a rant here – we all know I can do that and I can do it well. I am just stating what I have been trying to do as of late and perhaps you can join me in SCREAMING to this person who claims to be “in it for the impact, not the fame.” Well, if one has a painful affliction and one wants to MAKE AN IMPACT, I honestly do not know of a group whose voices are not only repressed by others but necessarily just by disease (how awful is that, anyway – that we are so marginalized and SHUT UP when we can barely stand up for ourselves as it is?) – like if anyone wants to talk about privilege and repression and whatever, you take any person from any demographic and if that person has any severe chronic illness that affects his or her ability to function in society as society dictates, that person is basically silenced. “We” do not want to know his or her suffering. “We” do not want to know his or her inability to provide for himself or herself or for his or her family. “We” do not want to know how he or she doesn’t have a home or enough money for food and insurance and meds, &c. &c. “We” shut US up – and WE don’t SCREAM enough to change that.

So to whatever your capability, please join me in screaming for the COURTEOUS treatment of those with severe disability / chronic illness (and especially those whose disabilities / chronic illnesses are not readily apparent because people do tend to think that if you don’t see something wrong, there IS nothing wrong – what could be more WRONG than that? Heart disease isn’t necessarily evident and that is wrong in a severe way; same with brain issues, &c. &c.) – I don’t even EXPECT the “equal” treatment – I just want FAIR treatment. And if you haven’t looked at the statistics or lived it yourself or TRIED to live without assistance, it is a very grim reality, indeed. It is terrifying, actually – more reminiscent of the anathema of something like a refugee camp of individuals fleeing their war-torn countries …. and sadly, that is not hyperbole. SO I DO IMPLORE YOU TO SCREAM WITH ME ON THIS ONE. AND LADY GAGA, DON’T JUST TALK ABOUT FIBROMYALGIA – LOOK AT THE VERY SERIOUS PAIN CONDITIONS OUT THERE AND ACT. IF YOU’RE NOT IN IT FOR THE FAME, PLEASE BEHAVE IN A MANNER CONSISTENT WITH THAT! Like I think if one of these “famous people” were to take $1 million, (a minute amount of $$ for someone like this!) that could hypothetically pay for the health insurance (and DECENT health insurance) of at least 10 people for at least a decade (if my maths are correct, that is; and of course, that could be shifted around so more people could be included, &c.). Just think about that – that is potentially saving 10 or more lives. That is all I will say for now.

More on “contentment” later! Thanks for taking the time to read this and I hope you are all having a happy and healthy day wherever you are in the world!

❤ Always, Beth


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