I really love this post from the National Organization for Rare Diseases about the delay a lot of patients have in getting a diagnosis. It prominently features a discussion about how often people with symptoms of rare diseases are misdiagnosed with mental illness. That impressed me because mainstream (non-psych) health groups rarely address the rampant discrimination people with mental illnesses face in getting treatment for physical problems. (This excellent NYT article also talks about discrimination people with mental illness face in getting health care and is well worth a read.)
I’ve dealt with two rare diseases: a brain arteriovenous malformation (AVM) that’s now fixed, and ulcerative colitis, a chronic autoimmune disease. I also live with moderate asthma and chronic pain from a back injury. Then there’s the mental illnesses. My current diagnoses are dissociative identity disorder (DID), complex post-traumatic stress disorder (C-PTSD), and major depressive disorder (MDD).
I was 17 when my AVM was diagnosed, but the symptoms started more than a year earlier. At first it was just headaches and dizziness. I went to see my doctor because I was worried I had an inner ear infection. (I had 5 ear surgeries before I started kindergarten because I had so many ear infections.) It wasn’t an ear infection, and he told me I was just stressed out. But the dizziness got worse, so bad I had to lean against a wall to walk from class to class. I went back to the doctor, but my mother told him I was just doing it for attention because I had borderline personality disorder. He blew me off without doing anything beyond basic blood work. Then I started having seizures. Again, my doctor accused me of faking it because he didn’t witness any of my seizures. (Sorry I can’t schedule my seizures at the same time as my office visit, doc.) He never did an EEG or a brain scan, never sent me to see a neurologist. He did call my psychiatrist and suggest giving me antipsychotics. Finally I had a seizure in my US Gov class in which I stopped breathing, and the school sent me to the ER of the local research/teaching hospital, where my doctor didn’t have privileges. They immediately did an MRI and found a large AVM, about the size of a golf ball. I had gamma knife brain surgery 5 days after my 18th birthday that cured the AVM, but it could’ve burst any time before then. That would’ve put me in a vegetative state or killed me.
Last year while I was at an inpatient trauma program, I got very sick–severe diarrhea, major blood loss, nausea, and excruciating belly pain. My psychiatrist there tried to treat me, but I got very sick very quickly. I couldn’t keep any food or liquids in my system, and my blood pressure kept crashing because of the dehydration and blood loss. The pain was unbearable. I ended up in the ER of the nearby medical hospital, where I met an intern who looked about 15. First, she questioned me for 15 minutes about why I was in the trauma program. She even wanted intimate details of my history of sexual abuse, which had absolutely nothing to do with why I was in the ER. She put me on suicide watch. I was running to the bathroom literally every 10 minutes, but now I had to leave the door wide open so someone could stare at me while I writhed in pain and had explosive, bloody diarrhea. Then she had the nerve to ask me if I had any stress in my life. If I hadn’t been in so much pain I couldn’t think straight, I would’ve said, “Yeah…it’s about 5’1″, wearing a white coat, standing next to my bed.” It got weirder from there.
“Is there something you’d like to tell me?” she asked.
“Uh…no.” I had no idea what she was talking about.
“Are you sure?”
Then she sent my suicide watch person out. “Are you SURE there’s nothing you want to tell me?”
I’m usually pretty quick, but the combination of excruciating pain and a dose of Dilaudid made me stupid. I had no idea what she was on about. “Yeah…”
Then she sat down on the edge of my bed and gave me this smug, condescending “Really, I care about your problems” look–it was something straight out of a bad seminar on bedside manor. “What did you take?” she asked in that smug voice.
There were so many things wrong with that question that I don’t even know where to start. First, they’d done a tox screen, which came back clean. Second, where the hell did she think I’d get enough drugs to overdose on while I was on a locked psych unit? They are fastidious about locking meds up. Third, I don’t know any drug overdose that gives you two weeks of severe diarrhea and a major GI bleed. Fourth, my sed rate and CRP (markers of inflammation) were extremely elevated. In fact, when I later got my medical records from that hospital, I found that Idiot Intern herself had written in my chart that they were “sky-high.”
But most importantly: PSYCH PATIENTS GET SICK TOO. Like, with things that aren’t in their heads and that they didn’t do to themselves. When someone presents at a doctor’s office or ER with a physical complain, the first assumption should be that there is something physically wrong. My mental illness shouldn’t mean that doctor demand a higher burden of proof of physical illness from me than they would from someone without a mental illness.
I was eventually admitted to the hospital. A few days later, a colonoscopy proved that I had fulminant (i.e., “about to kill you” stage) ulcerative colitis. I easily could’ve died–my blood pressure went down to 60/40, and they had a crash cart in my room. My entire colon was a continuous ulcer with abscesses. My cells were so inflamed that their nuclei exploded. (I didn’t even know that was possible, but it is. Google karyorrhexis. Crazy stuff.) The doctors were talking about doing a complete colectomy because they were afraid my bowel would perforate. But despite being that sick, I still had to convince Idiot Intern that I was genuinely sick.
And it doesn’t just happen with the big stuff or the rare stuff, either. A few months ago, I had to find a new primary care provider. See, I have a long and well-documented case of asthma, which is a common diagnosis. There’s also a statistical link between asthma and UC, and some of the meds I’m on for UC can cause pulmonary toxicity. My albuterol inhaler wasn’t doing the job, so I made an appointment with my PCP. I wasn’t having an attack while I was there (again, sorry I can’t schedule my symptoms to concur with your office hours, doc), so she decided that it was “just anxiety.” Her expert medical advice was, “Just relax and try to breathe normally.” I got a little pushy and asked for a maintenance inhaler–these aren’t risky drugs, nor can they be abused. She refused and recommended that I talk to my psychiatrist. It was all I could do not to cry in her office–I knew she’d just interpret that as a sign that I was crazy rather than asthmatic–so I managed to keep from crying until I got out of the door.
Luckily, I was able to find a new PCP who seems much better. I gave him the same explanation of my asthma symptoms that I’d given the ex-PCP, and he never once mentioned psychiatric illness. He even conferred with another doctor in his practice to see if I needed to be tested for pulmonary toxicity, given the UC meds I take. He gave me a prescription for a maintenance inhaler, which–don’t anybody faint–successfully got rid of my asthma symptoms. In short, he treated me like a human being with a medical problem, which is how all doctors should act.
But that’s something you don’t often hear medical organizations talk about. Awareness and anti-stigma campaigns mostly seem to just tell people that lots of people have mental illnesses, and you should be nice to them. That sort of unfocused approach doesn’t accomplish much in terms of concrete change. That’s why I’m very grateful that NORD addressed this issue in their blog post. I hope other medical groups will pick up on that message and amplify it. I hope doctors will read things like that, recognize their prejudices, and stop. I hope they’ll start taking seriously the medical complaints of ALL their patients. We deserve that just as much as people who don’t have mental illnesses.