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My aunt was institutionalised on account of severe panic attacks, anxiety & self harm tendencies. My father, who believed his sister when she said it happened only around her menstrual cycle, took her out of that place (against her husband's wishes) & found a gynecologist. 1/
She was found to have severe lesions in her uterus (this was 30 years ago, endometriosis was not a term my father said the doctor used) and was advised to have a hysterectomy. My mother nursed her in our home after the surgery. In 2 months, she was a totally different person. 2/
2 years ago, when I received my hEDS diagnosis, I called her & explained about it. My father, once again, took her to a rheumatologist who confirmed that she was definitely hypermobile (which is why it took a long time for her to get an arthritis diagnosis). 3/
She broke down in tears saying that for nearly 60 years no one believed her when she said her bones were moving and cracking. She also has POTS (all my aunts do, as did my grandmother) & has had dizziness for as long as I can remember. 4/
You would think that after all this time patients would be believed but no! I wasn't believed for nearly 25 years! However, thanks to my idiotic persistence (as my father calls it), 3 generations of my family now have a diagnosis of hypermobility. 5/
My son was diagnosed when he was 9 because of this & has a great team of medical professionals taking care of him. He will not sit for more than one appointment with a doctor who does not believe his pain, knows his rights as a patient, will not take any medical gaslighting! 6/
#MedTwitter - Doctors, please listen to your patients. Please trust us when we say what is happening in our body. Do not discount everything as being related to mental health. Please pay us the courtesy of assessing our symptoms objectively & do a differential diagnosis.#NEISVoid
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