Finally getting a diagnosis

has kind of opened up a can of worms for me. It has been validating for obvious reasons, but also for less obvious reasons. It has also brought up a lot of issues that I’d not considered before, or not really allowed myself to explore. When you are sick chronically, from childhood, and doctors, your entire life dismiss, invalidate, disbelieve, and degrade you, you can’t help but internalize that. Even though you know you’re sick, you start to internalize their consistent message that you are not sick and that you’re just a whiner or fat and depressed and either way, it’s all in your head. When that has been your experience your entire life, you start to disbelieve your own body and your own experiences. When you have that much trauma, and yes, it is trauma, surrounding doctors, not only do you start to internalize it, which has it’s own very real set of repercussions, but you also start to always downplay your symptoms as to not frustrate or upset the doctors in any way. You kiss their butt. You agree with them when you know they’re wrong and very gently and politely offer that you are not a professional and so it might be totally off, but… You handle things in life as they come, EXCEPT with doctors. You are no longer able to advocate for yourself because you’re so afraid of backlash. You’re so used to being told no and that you’re fine, that you no longer ask for tests, and stop going to the doctor at all for long periods of time, because what is the point? It’s just traumatic and awful. Nothing is accomplished.

That is an aside…

…to the actual medical issues. That’s a battle on top of the physical and mental battle of chronic illness. For me, undiagnosed MS for 30 years. Can you even imagine living your entire life with fatigue? Even as a child? Can you imagine not knowing you have fatigue and wondering your ENTIRE life why you can’t do what everyone else can do? Why you’re not able to go to school AND have a job without one or both completely suffering. Why you never were able to do more than one or maybe two things in a day, even at your very best. Why you struggle so much with things that don’t make sense to struggle with. While all the while being told by doctors that either you’re a faker or a hypochondriac who needs to sleep and lose weight. While never getting help for your medical issues. I can, because that’s my story.

I have had two doctors, different practices, different cities, both women, tell me that it was okay, and that I’m still pretty. As in, in spite of my weight gain, I was still pretty, so to hell with the symptoms. I had a doctor, right before my MRI and diagnosis, bring up MS four times in the first visit. He was floored that I’d not had an MRI, and mentioned in three times. I hadn’t considered MS before then. We thought Lupus. I told him that what he said made sense and I’d like to have an MRI to rule out or diagnose. He denied me an MRI and told me he was sure I don’t have MS. I had an ophthalmologist tell me, despite my incredibly diminished peripheral vision in my left eye, that I was fine but that he’d recommend an MRI, UNTIL I was excited about that and told him I’d wanted one but my doctor had refused it. He scolded me for questioning the doctor. I. Am. Not. Joking. A month later I was diagnosed with MS after getting an MRI by kind of a fluke. I have had abdominal/gastrointestinal issues for over a decade…

Guess how many colonoscopies I’ve had…

ZERO. My rheumatologist became my primary and ordered one for me, so I’ll have one this year. Guess how many abdominal CT scans I’ve had, aside from the ER when I had an emergency appendectomy. ZERO until last week, BECAUSE the one and only doctor who has ever cared and has ever done their job (I now also have an amazing MS specialist neurologist who is AMAZING and who we love), is finally my primary and ordered it. You know what he said “What was going on? Everyone must have just written you off as a whiner. It doesn’t make any sense.” Ding ding ding. But the vast majority of people with chronic illness, especially autoimmune, and especially women, are largely dismissed and invalidated by doctors. They don’t get the treatment they need and deserve, and they have to fight nonstop, tooth and nail, just to get a diagnosis. It’s not okay. And there is no recourse for being so mistreated and having doctors refuse to do their jobs. It’s really disheartening. But I am so, so happy to have my two doctors who are truly incredible and who I actually trust. There ARE doctors out there who are good and who care about their patients. It’s just really ridiculously hard to find them.

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