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    Can’t ACCESS treatment!

    The only available treatment for my 16 year long battle with a secondary autoimmune neuropathy is unfortunately inaccessible to me due to:

    - insurance not willing add it to its coverage guidelines yet

    - out of pocket cost being $9.7k/infusion.

    According to my doctor, I need these infusions for at least 12 months to start.

    This is what medical exclusivity looks like.

    I live every day with neuropathy burning me from the inside out, which is quite literally hell and I cannot access treatment.

    #AutoimmuneAutonomicNeuropathy #SmallFiberNeuropathy #autoimmune #treatment #Disability #Accessibility #access

    38 comments
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    Extra-pelvic endometriosis isn’t rare; endometriosis specialists are

    It’s not okay that endometriosis patients are so mistreated and ignored that I am at the point that any medical appt makes me feel extremely scared and anxious. It genuinely fills me with rage at this point. The fact that I’ve been treated like literal garbage by so many doctors for so many years—for over a decade—that seeing someone new makes me this upset is a disgrace. To be vulnerably honest, friends, I really do feel like I’ve been traumatized by this over the years, after having to deal with this many salty doctors’ snide comments, dismissals, and deflection of blame onto me as if I am not sick—instead I’ve been treated like my mind is the problem—all because of their bruised egos that they weren’t skilled enough to help me, or their ignorance due to THEIR lack of knowledge about my illness.

    I have seen three doctors this year alone who have refused to even believe me. They offered me nothing more than some iteration of: “no one has that much pain from a period try ibuprofen,” even after seeing my book-length chart & my surgical diagnosis! Before I was diagnosed it was even worse—I spent almost two years (my whole MA) in pain almost every day, physically & mentally, and I had no choice but to cope as best as I could with zero assistance from any of the many, many doctors I went to see during that time. It stopped me from being as social and active in my program as I wanted to be too—and it was all because my doctors were a joke who said I was fine &/or who told me my pain wasn’t even real and that I should see a psychiatrist. They were awful. They made me feel completely hopeless. At my lowest point, I even started to question my own mind and my own bodily experience. They treated me like I was “hysterical” to the point that for a while, I actually felt like I was losing my mind.

    The worst part about all of this though is that these doctors, the people who I should have been able to rely on to help me, didn’t just fail to do their jobs—they also made my illness and my pain significantly worse. If I hadn’t been dismissed, derided and put down by doctors for the last decade that it was growing in my body, then my endometriosis wouldn’t even have progressed to its current multi-organ state. Now it’s so painful I can barely function most of the time. How messed up is that?!

    Our society teaches us that doctors can be trusted and they always know more than we do—endometriosis patients can confirm that is a LIE. We, the endo warriors, are the true experts when it comes to endometriosis. The majority of OBGYNs and primary care doctors know less than we do, worldwide, and that is a serious problem. #Endo #Endometriosis #endometriosisawareness #MedicalTrauma #MedicalPtsd #ChronicIllness #Misdiagnosis #access #HealthCare #Diagnosis #reproductivejustice

    Post

    Just curious as to what access issues you all are currently dealing with? #Disability #Accessibility #access

    10 comments
    Post

    Hey everyone

    I created this group to help you help me. I am starting a podcast on wheelchair access issues and would love community input so I can build my episodes with information collected from those who deal with it every day. #Accessibility #access #Advocacy #Podcast

    1 comment
    Post

    Wheelchair access to pain management - I’ve finally got an appt but there’s no wheelchair access, is this legal/discrimination?

    #WheelchairUsers
    #Fibromyalgia #PainManagement #access #noaccess

    6 comments
    Post

    #access for low income people

    #MentalHealth
    So, if Obamacare is obliterated cost of mental health care it's probably going to be limited or too expensive for someone on a fixed income. That bothers me.

    1 comment