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    The Long and Winding Road *TW*

    As someone with a chronic illness, and after having sat vigil for several nights by my father’s bedside keeping him company so that he would not be alone when he died, these lyrics by Waylon Jennings has always carried some significance for me:

    “If you see me getting smaller, I'm leaving, don't be grieving, just gotta get away from here. If you see me getting smaller, don't worry, I'm in no hurry, I've got the right to disappear.”

    Today was both surreal and a challenge.

    While catching up with a friend, in chatting about my illness and the lack of progress or any meaningful medical support, I casually mentioned that I have allocated in my mind a bit of a timer. In that if from some years from now if things do not improve and my quality of life decreases any further, I will consider my options and my own right to disappear.

    She did not take this well and came at me from every angle to dissuade me from even considering this path. It was a difficult conversation to have but in some way I’m grateful for it, in that my conviction on the subject is undeterred. In Waylon’s words, I feel I have the right to disappear. And as Nina Simone famously sang “if I die and my soul be lost, Nobody’s fault but mine.”

    I’m borrowing a lot of other people’s words today but in the words of Forrest Gump; “And that’s all I have to say about that.”

    No sooner had I finished this phone call, I got a call from my doctor and found out from him that when the hospital reached out to him to ask for information about my medical history, they were trying to get him to agree that I suffered from a psychosomatic disorder. Never mind that I was in fact suffering from chronic hyperthyroidism, and the very first thing I found when I googled ‘inverted T-waves’ was that it is most often associated with thyroid conditions—instead of getting an endocrinologist to review my case, the first thing they reached for is that I must be crazy.

    As much as I continue to fight for answers and advocate for myself, I do not have endless resources at my disposal. So while I continue to hope for and try my best, I do not think it is unreasonable to consider the worst case scenario given how many doctors I saw while in hospital, all of whom failed to consider or identify that my cardiac symptoms were thyroid related despite me suggesting this on numerous occasions.

    This whole day has provoked some soul searching and I find these words from The Castaway by William Cowper echoing in my mind:

    “No voice divine the storm allay'd,
    No light propitious shone;
    When, snatch'd from all effectual aid,
    We perish'd, each alone”.

    Of other people’s opinions on my health journey and to circle back to the Paul McCartney penned song from the title of this post—and a serendipitous nod to name of this group—I’ll end this post with these borrowed words that I think rather effectively summarise what it is to live with an invisible illness; “Many times I've been alone, And many times I've cried, Anyway, you'll never know, The many ways I've tried”.

    #Grief #GriefQuotes #MightyPoets #MightyMusic #Thoughts #medicalgaslighting #Gaslighting #MyCondition #MyalgicEncephalomyelitis #ChronicFatigue #InvisibleIllness

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    Ever Been Misdiagnosed? #Misdiagnosis #medicalgaslighting #StiffPersonSyndrome #CommonVariableImmuneDeficiency

    Just curious, have you ever been misdiagnosed?

    If so, how did that label effect how you were treated by medical professionals?

    Did it have any long term consequences such as difficulty obtaining disability?

    Considering writing a short story on the negative impacts of being misdiagnosed. My experience led to years of delayed necessary treatments, medical gaslighting, and Inability to obtain disability.


    Need advice on how to pay for medical bills as a student

    I am considering seeing a functional medicine doctor because I've been having a lot of pain and other symptoms that regularly practicing "Western medicine" doctors are dismissing or not paying attention to. When they do "listen," they suggest prescription meds, which I have tried and am strongly opposed to. However, they're expensive and don't usually accept insurance. I'm considering taking out a personal loan through my bank or maybe using a low interest credit card and doing it anyways. I could also take out additional student loans, but I'm already in about $80,000 of student loan debt. Has anyone else paid for medical bills using any of these methods or seen a functional medicine doctor? Is it worth it? Any advice? Thank you! #ChronicIllness #money #medicalgaslighting #functionalmedicine


    Learning to accept my invisible disabilities and my road to becoming a health equity advocate this Disability Pride Month

    I recently have been taking big steps (for me) to accept my chronic illnesses, including applying for disability, publicly identifying as disabled, and starting to speak publicly about my experiences with #medicalgaslighting and #MedicalPtsd that are not uncommon for women with autoimmune and / or neurological conditions.

    I have been extremely isolated throughout the pandemic, and have faced a significant amount of retaliation for trying to hold local hospitals accountable to women, BIPOC and other stigmatized #ChronicPain patients. I have learned so much from the online chronic illness communities, and hope to pay the support and advocacy forward to other multiply marginalized women who are also struggling to get the health care and respect they need.

    I would love to connect with other #ADA and #OCR health care activists, in particular. I’m sharing the first of my advocacy pieces below - reaching out to advocacy groups who will interview you and help publish your story is a great option for others who are also too shy to write for themselves. I hope to gain that confidence in myself over time, and look forward to building a community of support here at The Mighty!


    Chronic pain dismissed by doctor

    I went and saw a rheumatologist yesterday because of some physical symptoms I've been having. Specifically, my knee locks and I have to kick it really hard to make it unlock and then it's sore and tender for days. I also have pain in my knees, ankles, low back, upper back, shoulders, neck, and jaw. My primary care provider referred me to this Doctor when I told her I was concerned that I may have joint hyper mobility and am interested in figuring out what is causing my discomfort.

    At my appointment, I had no visible signs of inflammation, so the specialist told me there was no need for testing for rheumatological conditions. She did note that my joints are hyper mobile and recommended genetic testing for that. When she touched and put pressure on my joints, it felt very odd and twitchy. Almost like an electric feeling. All she said was "there's some crunching but no inflammation."

    When she saw in my chart that I used to be on antidepressants and a mood stabilizer, she asked "who's idea was it for you to go off of those medications?" and I told her my own. She asked if my pain was better when I was on them and I said I am here for physical health, not mental, and I have a therapist who I see regularly.

    She recommended taking tylenol, and I told her I prefer not to. Then she said "well if you don't even need tylenol...." suggesting that many pain is not bad. I insisted "No, it's not that I don't need it, I prefer natural methods such as cannabis and resting when I need to." She became very dismissive after that and basically just told me that nothing is physically wrong and to go see my therapist.

    Does anyone have any advice on where to look for help next?? I'm getting desperate.

    #CheckInWithMe #ChronicPain #hypermobity #medicalgaslighting


    New to mast cell activation syndrome

    I've self diagnosed, since I've suffered from symptoms but #medicalgaslighting kept me from finding the problem. Looking for a way to cope and find a community.


    Disposable #medicaldiscrimination #MedicareQuotas #systemicelderabuse #qaly #daly #medicalgaslighting #disposablehumans #elderdiscard

    In the past two years, I have been denied access to mental health care by 25 clinics in Oregon, 5 clinics in Nevada, and 2 in Kansas for being at their Medicare quotas. In the past, 5 months, I have received a formal dismissal letter from the ENTIRE Kansas University Physicians Network, received dismissive treatment by a doctor at Overland Park Regional Emergency Department who used the code word, GOMER (Get them Out of My ER) when speaking with an aid about me, AND, after a CT scan at Menorah Hospital in which they found a 5mm nodule in one of my lungs, discharged me with instructions to follow-up in ONE YEAR! No bronchoscopy, no biopsy.

    I have called a State Ombudsman who told me to call the Governor's Advocacy Office because they only help with Medicaid. The Governor's Advocacy Office told me to call the Ombudsman's office for the same reason. I called NAMI and was told to make a report to the Federal Comptroller. I lodged a complaint with KU Patient Services and my Medicare Advantage plan Quality of Care department as well as with the State Board of Behavioral Arts and Sciences. I tried to hire an attorney through 3 different firms for a medical negligence case and was told there is a conflict between law and fact. The facts are I have extensive, detailed documentation. The law states it is legal for my healthcare to be deprioritized on the basis of QALYs and DALYs.

    I am 61 years old, disabled, on SSDI and Medicare and feel I am being treated as if I am a disposable human whom society falsely perceives as no longer having anything of value to contribute and who should stop stealing air from those perceived as being worthy.


    Just excisting #medicalgaslighting #Depression

    Woke up this morning like every morning to play on my phone or whatever because I just excist. I hate the fact I am not allowed to do anything.

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    Bilateral swelling of ligaments and tendons

    Hey bendy friends. I am at the end of my tether with the doctors and so called specialists. I have swelling in my tendons and ligaments that are identical on both sides but apparently there is nothing wrong ? Any way because it’s both sides and because it’s not just one side I have been fobbed off yet again. Please tell me it’s part of being bendy ? I did suspect rheumatoid arthritis but my bloods are not showing this according to the go ( I know you can still have RA without the factor in your blood but the doctor isn’t having any of it).
    Picture of our new rescue dog because he is cute ❤️

    Please tell me I am not going mad ?

    #bendybunch #EDS #Inflamation #Tendons #ligaments #medicalgaslighting #Feelinglost #lookingforanswers


    Possible new diagnosis

    I've been searching for answers for years for the reason why I have pelvic pain and terrible periods. I've gone to multiple doctors and had tests galore. After fighting with the insurance I finally was able to see a specialist and get an ultrasound. When I got the test results back it seemed like I have #PolycysticOvarySyndrome . I haven't been to my doctor yet to confirm but it's such a bittersweet relief as I've been made feel for years that it was all in my head or that it was because of trauma. I'm hoping to find out more here soon. #Disability #MentalHealth #medicalgaslighting