Ali's Story

That Time My Dr Blamed Drugs, Psychiatric Disorders & Method Acting For My Rare Disease

Just when I think maybe my medical trauma isn’t that bad, pictures like this pop up in my snapchat memories and I’m reminded of just how bad it really is. I remember that day so clearly. 

I had been diagnosed with Antiphospholipid Syndrome (APS) in December and had spent January and February in and out of the ER and urgent care. The doctors I saw there were worried about my risk for a heart attack since the new symptoms I was having with my Hemiplegic Migraines (HM) had been mimicking one. A few of the specialists I was referred to had appointments open immediately and if I didn’t take them it would be a few months before I could get in again.

I had been talking to my acting school about taking a medical leave to be able to go to all of these appointments. Unfortunately a medical leave wasn’t an option unless I was willing to lose my financial aid. So on the day of my hematology appointment I got the okay to do my scene first and leave my afternoon class early without it counting against me. I got a call during my break in between classes saying they had an earlier appointment so I talked to the staff and went thinking I’d be able to make the last 2 hours of class instead of only the first 45 minutes.

I spent 3 hours in the waiting room before getting vitals taken. The nurse took a few vials of blood and explained that since I was a new patient, the doctor was going to want some tests done.

When she went to draw my blood, she paused and inspected the scars on my arm from previous blood draws. She accused me of being an addict. I explained to her that I have deep veins and scar tissue from monthly blood draws, IV’s, and infusions over the last 7 years. She didn’t believe me and said some of the scars were too large to be from a blood draw. I calmly tried to explain that some of them were from donating blood before I got sick and the others were from the nurses who used to do my monthly blood draws using the scars as a guide to find my veins and repeatedly using the same area. She rolled her eyes and said they must have not been good nurses if they couldn’t find the vein. It then took her three tries to find one. 

She sent me to a different waiting room where I spent another hour before being taken back to a room. I asked that nurse if it usually takes so long to see the doctor and she told me that at that clinic it does. It took another 45 minutes before the doctor came in. At that point my class had ended and since I wasn’t able to make it to any of it, the absence was being counted against me. 

The doctor looked through my notebook that I use to track my pain levels, symptoms, and medical history. Usually doctors start to listen to me when they see how diligent I am about tracking this stuff, but he was different. Because I had written Hughes Syndrome (a popular name for it in England) instead of Antiphospholipid Syndrome he said the disease wasn’t real. He looked at the positive test results and said it meant nothing. 

Then he grabbed my arm and pulled up my jacket to look at where the nurse had taken blood. She told him about the scars and he accused me of being a drug addict and that I was making the disease up to get drugs. He continued looking through my notebook and saw that I use CBD and have my MMJ card, which only confirmed his stance on my being an addict even though I hadn’t even drank in 7 months and had never used the drugs he was accusing me of using.

I flipped through the notebook to show him the section that lists the medications I can’t have and pointed out that opioids are listed. The nurse that was with him said that I probably only put that to trick doctors into giving me them. I tried to calmly explain again that I didn’t want pain killers, I wanted to explore treatment options to treat the disease. He said treatment options weren’t necessary because I didn’t have APS, I must have this “Hughes Syndrome or whatever” and handed me pamphlets for nutritionists and drug counselors.

I was pissed. I screamed “Hughes Syndrome and Antiphospholipid Syndrome are the same fucking disease! Hughes is just the name of the doctor that discovered it.” He told me I was wrong, and that maybe my symptoms weren’t drugs after all. Maybe it was all psychosomatic and I should get psychiatric help. I screamed “I can’t believe I fucking missed class for this bullshit”. He asked what I was in school for and without thinking I said acting. He told the nurse “oh that explains it, she must be a method actor. She’s just faking it for a role.” I told him to go fuck himself and left.

I held it together till I got to the subway where I cried so hard my $300 specially made contacts to help with photophobia fell out. By the time I made it back to school to grab my stuff it had been over 7 hours since I left for the appointment. I ran into a friend who asked where I had been. I broke down and explained everything. I told them after 7 years of not knowing why I was so sick, I finally had an answer and yet I couldn’t find a doctor who knew what it was or believed I had it.

In the weeks that followed I asked for the test results, but never got them. It took about three months before I could get into see another specialist and by the time that I did and he ran the test, the results came back higher than they were in December when I was diagnosed. I spent the following six months going through treatments before maxing out my insurance for the year. Luckily, I was no longer testing positive and my health had significantly improved so skipping treatments and appointments for the rest of the year wasn’t as horrible as it could of been.

Bottom line, accusing your patients of being “drug seekers” or “hysterical” or saying it’s “psychosomatic” and they’re “faking it” is fucking up not just mine, but a lot of people’s lives.

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