“Let the doctors do the thinking”
That’s what my GI specialist said to me yesterday and I can’t stop thinking about it.
I went in because I’ve been having GI issues and I wanted to discuss the connection between being hypermobile, having suspected dysautonomia and possibly MCAS.
He also said I couldn’t be hypermobile because “those people are contortionists”.
I told him about how eating gives me cramps with sometimes trigger a (vasovagal) pre-syncope. “Who told you that?” He asked. I told him it was my cardiologist and he looked at me like I was lying.
When I tried to explain my reasoning for thinking these conditions were connected he said I should “let the doctors do the thinking” and stop looking into things I don’t have. Because it’s not possible for a person to have this many diagnoses (hypothyroidism, endometriosis, PMOS, fibromyalgia, ankylosing spondylitis, allergies, asthma, chronic migraines, chronic vertigo, dysautonomia, hypermobility).
I feel like I’m crazy. It’s taken me almost three years to get my cardiologist to ask for a tilt table test after living with severe symptoms of dysautonomia. I’ve had 2 holter test come back normal except for sinus tachycardia. I had a normal echo, my ECGs are normal.
I have hypothyroidism so I was told it was because of that but my test came back normal. I was told it was perimenopause but the tests showed my ovaries haven’t completely withered off and died yet.
My rheumatologist refused to formally assess me for hEDS because “it won’t make a difference”. He said it would take a genetic test to find out even though I know there aren’t genetic markers for hEDS specifically.
I am bendy, but not contortionist bendy.
I’ve been told I can’t be hypermobile because I’m not tall and I’m fat.
I’m angry because these doctors seem to think I enjoy taking a fistful of pills every day. Going to appointments and spending hours waiting in a room that’s a sensory nightmare. Feeling like shit and not being able to do anything.
I’m tired of advocating for myself, every step of the way, every diagnosis has come with years of me having symptoms and being dismissed as anxious and fat. And then by chance there’s a test or something that confirms I was actually not making it up. Or a surgery, I was told all my adult life my extremely painful and heavy periods were “normal” for me (because I’m fat) and when I had a hysterectomy because it had been infested by fibroids they found I also had endometriosis.
When I saw the first endocrinologist about my symptoms he said I had subclinical hypothyroidism and I couldn’t possibly be experiencing symptoms. He then proceeded to tell me I needed to “sew my mouth shut” and stop eating.
It took over 5 years of having chronic uveitis to be referred to a rheumatologist. And a few years after that to be diagnosed with ankylosing spondylitis because I’m seronegative and it’s a man’s disease.
I am allergic to sunlight and I’ve been telling that to doctors for years, and not once, not one of them told me I had to supplement vitamin D. I didn’t know we needed the sun to produce vitamin D, I found out when I started to research possible causes for my symptoms after being told my joint pain was caused by aging and being fat. I got the test done by myself and I was absolutely depleted of vitamin D.
Maybe I am crazy. I don’t know. All I know is that I’m tired and this isn’t living.