00:02Not having your symptoms believed is anguish. It messes with your head. After a diagnosis,
00:09disbelief can become deadly. My name is Beatrice. I'm an artist based out of New York City,
00:15and I live with a chronic illness that attacks my vision. My disease is rare, which puts me in the
00:20situation of having to advocate the parts of the system that what I have is possible,
00:25and the disbelief comes even from some doctors.
00:52I first started noticing that there was something about me that
00:55was kind of wrong when I was 16. One night when I was at work,
01:01I realized that I couldn't really hear out of my left ear anymore.
01:07I went to the doctor who recommended that I get a cochlear implant surgery.
01:13Whether or not that was actually what was wrong with me, they couldn't say.
01:18So I decided to live with the hearing loss.
01:32When I was 18, I moved to New York to study fine arts at the Cooper Union.
01:36I'm just thinking about the composition a little bit.
01:40About six months into moving to New York, I started to have other symptoms.
01:45My joints got stiff.
01:47My fingers had lesions all over them.
01:51I went to the emergency room.
01:54They diagnosed me with MRSA and gave me antibiotics and sent me home.
01:58Later, I found out that there was actually a test for MRSA, which they didn't do.
02:02A hundred mils left.
02:05Once I was given antibiotics, what was a small set of lesions on my fingers
02:11quickly became a huge set of lesions on my wrists, my elbows, my knees.
02:17Like a little extra resin.
02:21That's when I knew that there was actually something probably very wrong.
02:28I went to go see another doctor.
02:30He put me on oral steroids and my lesions quickly disappeared.
02:35And within five days of being off steroids, they came back.
02:38Now I have to make several phone calls to different doctors to tell them what's going on.
02:47From there, I saw a series of well-meaning but incompetent doctors.
02:52I saw a series of cruel doctors who did not believe women could feel pain.
02:58One doctor thought I had HIV.
03:01Another told me I should stop worrying and get a boyfriend.
03:04Another denied my treatment and I later found out that he was arrested for negligence when a female patient died
03:11under his care.
03:12They all seemed to agree, however, that I was just too young to be sick.
03:16Monogrammed pill cases.
03:18They so specifically targeted it to me.
03:22Are you sure this isn't the chemicals that you're using in the studio when you're making your art?
03:26This must be psychosomatic.
03:29You know, maybe you should see a psychiatrist.
03:31Then one day, I went blind.
03:33It took my blindness for a doctor to take me seriously.
03:37And finally, at 21, I was diagnosed with Kryon, an extremely rare disease.
03:44The toxin was 24, though.
03:48There's no set treatment plan for how to live with this condition.
03:52So for the last eight years, I've had to learn how to live with it.
03:58I take lucavorin once a week.
04:01I take methotrexate subcutaneously once a week.
04:05I take Adderall every day to give me, like, artificial energy.
04:11I don't have ADHD.
04:13I also get IVIG infusions every six weeks.
04:18I get rituxan infusions every six months.
04:21And after rituxan, I take this one, vanifin and famotidine.
04:26This is chemotherapy.
04:28This is sulfameth.
04:30This box is one of the most important medications that I'm on.
04:34It is the only migraine medication that works.
04:37And that doesn't give me seizures.
04:40It's like I have a very expensive, inefficient car that I pour a bunch of money into and I don't
04:45get much back from.
04:50Having a chronic illness means that every time you have to recertify a medication,
04:55every time you're going in for a procedure, every time you're in the emergency room,
05:01you're aware of the fact that you're having to prove yourself.
05:05In the denial, did they send you any other, like, infusion centers that they would cover?
05:14Continuing to get the meds that I need depends on me being believed.
05:19If my boyfriend goes with me to the hospital, I have a better chance of being taken seriously.
05:24I'm disabled now. The government says so.
05:31Since my diagnosis, I've lost my vision 72 times and the stakes only get higher and higher.
05:39I'm terrified of not being believed.
05:42It is that fear above all others that keeps me up at night.
05:46M-m-m-m-m-m-m-m-m.ly.
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