I’ll start today by discussing the diagnosis process, and specifically, chasing diagnosis while in college. For those who don’t know much about chronic illness, persistent symptoms are often hard to diagnose, and there’s an incredible amount of gaslighting in the process. 1/

Personally, most of my conditions are issues I was born with, but didn’t begin to present severely enough for me to notice until I was about 16. This is common for many people like myself with chronic pain and GI issues. It’s hard to know exactly what “normal” is for bodies. 2/

I assumed these problems were normal, partly because medical professionals undermined my symptoms and labeled them as psychosomatic. This is common among young women with chronic symptoms. I was often told I was “too young” to experience my symptoms. 3/ https://tinyurl.com/yxv269og 

These professionals were RNs, who aren’t able to diagnose. I couldn’t access an MD, as rural healthcare is poor. I was privileged as a cis white woman, healthcare barriers & biases are much greater for others - especially, in MT, Indigenous people... 4/
https://tinyurl.com/y45grt34 

… and transgender/ gender non-conforming people. My 1st medical misadventure was at 16, when I was very tired and felt poorly, but was told “teens get tired!” By the time I convinced them to test me, I found I HAD had mono… about two months ago. 5/
https://tinyurl.com/y4ohkcml 

At 17, I had severe lower abdominal pain. “It’s just cramps!” they said. After ~6 months of pain, I again was able to convince somebody to test me for something - turns out I had large, recurring ovarian cysts. The NP really said, “Wow! Must be painful”… yes. I told you that. 6/

Poll 1: Did you experience medical gaslighting as a teenager and/ or child? Did it affect your view/ trust of the medical system? 7/

So, I went into college already not trusting the medical system (later learned this is called medical trauma). So, when I started throwing up most days and being nauseous most of the time, I cautiously sought the advice of the one doctor on campus. He was not helpful. 8/

He always asked if I was pregnant (even tested me once) though I always told him I was not sexually active at the time.
Poll 2: Have doctors not believed you when you say you aren’t pregnant and/ or sexually active and/ or not active in a way you could get pregnant? 9/

He asked me every time if my vomiting could be caused by excess drinking, even though I told him I rarely drank because it made me so nauseous.
Poll 3: Have you had a doctor doubt your word about your “lifestyle” (including but not limited to diet + exercise + drugs)? 10/

After some time, I convinced him to do more than blood tests - found out about my GERD, hiatal hernia, and gallbladder dysfunction. Cool! What can I do about it, you ask? Take over the counter heartburn meds & not be able to have an “elective” surgery to correct my hernia. 11/

Poll 4: Have you ever been prescribed something (medication, treatment, therapies, etc.) that your insurance denied? If so, did your doctor follow up with you to find something you can access that might help, or did they not prescribe alternatives? 12/

Then - the doctor retired. My school didn’t hire another for some time, and I could only use university healthcare due to my parents’ insurance policy. And before they hired another one, I went abroad - something many disabled students can’t do. 13/
https://tinyurl.com/y4aveny5 

For me, in Spain, I had difficulty adjusting to the meal times - dinner is relatively late, which is known to worsen GERD. I also shared a room - bad for insomnia. But, in a host home, I couldn’t change either situation.
Poll 5: Did you want to study abroad? Were you able to? 14/

Back in the US, I began applying to grad school, and realized I could not do that, be a full time student, & pursue diagnosis. Getting a diagnosis takes time & energy investment - it takes 7.5 years on average to receive a correct, full diagnosis. 15/
https://tinyurl.com/y23kskno 

I should note, I went through undergraduate without accommodations because my diagnoses weren’t enough to “prove” my symptoms (which, what?) and the doctor wouldn’t write to the DS office to verify my symptoms because he didn’t have a firm diagnosis… 16/

… And didn’t want to attest to something he couldn’t prove, because he’s liable to defend any accommodations granted to me. I also suspect he didn’t fully believe me, didn’t think I really needed the accommodations I requested, and didn’t want to deal with more paperwork. 17/

So, here I am in grad school! My diagnostic journey continued this summer, after my appendix burst & I had to get a general practitioner. Now I am pausing the journey, after a number of tests found no explanation, to move to the east coast for school. 18/ https://tinyurl.com/t959xp9 

I’m hoping to see some good doctors in NYC, where my university is, but first I have to find a place to live there! Moving in the pandemic is going to be not fun, my cat and I do not like road trips. But for better healthcare, I hope it’s worth it! 19/

That’s the end of my thread on pursuing diagnosis and being a student! I have some accommodations in grad school, though it took a few months of fighting the office into helping me. It was frustrating, largely because their requirements and communications were not clear. 20/

Poll 6: If you have sought accommodations in higher education, have you been able to attain them? If so, were they (relatively) easy to attain? 21/21