I was diagnosed with idiopathic pulmonary arterial hypertension (PH) nearly three years ago.
It was a few days before Christmas. PH is a rare, life-threatening heart-lung condition that is incurable, and often fatal. My family and I received the news that I had five years to live, maybe ten, and I was sent home with supplementary oxygen to use 24/7.
I was only 25 years old.
PH doesn’t discriminate and can affect anyone. However, it is most prominent among women of childbearing age.
I can’t say for sure how this affects treatment, but from my experience and ideas, I wonder if women are diagnosed with anxiety, before a proper diagnosis, than men. I also wonder if treatment or awareness would be positively impacted if PH did not affect women the way it does. Women are four times more likely to develop the disease than males.
I’ve experienced sexism from several male doctors through the course of my treatment. I want to be proactive in my treatment, and I don’t believe that I have received a correct diagnosis. (I don’t believe I have idiopathic pulmonary hypertension, I think I know what caused it and have a timeline of events.) On several occasions, I have expressed my concerns. I have also brought research to help back up my theory in hopes that my doctor would consider my thoughts.
Unfortunately, my doctor said “don’t worry about it sweetie, that is my job” and patted me on the head when I voiced my concerns.
I felt infuriated and hopeless. How could I ever get a doctor to take me seriously if all he saw was a child or a helpless sick girl?
How could I ever be proactive in my treatment if my doctor wouldn’t let me ask legitimate questions, even when backed with professional medical material from medical journals?
The answer is that I can’t. I can’t get the treatment I desire. I can’t have my questions answered.
Even worse, I might never have answers. Without answers, I will always wonder if more could have been done. What if there is another issue at hand? Could I receive better treatment if that underlining cause is treated?
I might never know. I’ve switched medical teams several times and my concerns are never considered as an actual theory that at the very least, needs to be ruled out.
The sexism that I have experienced stretches even further.
Every couple of months I have a PH check up where I have to complete a triathlon of tests including blowing my lungs out while trapped in a glass box and walking as far as I can in 6 minutes. This may not sound like a lot, but for someone who is disabled due to a heart and lung disease, it is a freaking marathon.
A few months ago I got my period the day I was supposed to go for my check up. I called and canceled, surely they would understand. I imagine chronically ill people have to cancel appointments for a variety of different reasons. The receptionist was very compassionate and understanding, telling me she often had to miss work in her youth due to the severity of her periods. I felt relieved; it was no sweat.
About 15 minutes later my phone rang, it was my newest PH doctor. He had called to chew me out. He told me that I needed to come to the office and in the meantime take a Tylenol.
I was dumbfounded.
Surely this medical professional understands how painful periods can be for some women, especially on top of a chronic illness. I tried calmly to explain why I could not come, and how there is no way I would be able to perform any of the tests. He proceeded to get angry and told me that if I didn’t come, I would be cut off from my life-prolonging treatments. (Don’t worry, I called my specialty pharmacist, and they confirmed this couldn’t happen.) It was at this point I knew that it was time to switch to yet another specialist.
A few months later I started to experience pelvic pain. I saw my family doctor, and my concerns about my periods were finally met with equal concern. I was sent for a pelvic ultrasound and finally got some answers.
My uterus is a hot a mess and looks like Picasso’s Guernica.
My one ovary is in the wrong spot, one has a large cyst, the other has several cysts. I also have endometriosis, along with a wall going all the way down my uterus.
My family doctor gave me the great news about my fucked up uterus because I didn’t have enough strikes against me. He mentioned it wouldn’t be a big deal otherwise, but because of my condition surgery to fix the wall is advised, and I have had an allergic reaction to birth control in the past. He explained that if I got pregnant, the fetus wouldn’t be able to survive because of the damn wall in my uterus, but that is was no big deal since I wasn’t planning on have kids anyway.
This is where he is wrong. Three years ago I found out that I have a fatal condition, and that pregnancy in PH patients carries a high mortality rate. For some reason, I carried a small torch inside hoping that I could be the exception and that maybe I could someday have children.
You see, I was planning on having children, but PH took that choice away from me. I studied education, I worked with children, I even took parenting classes and took home one of the dumb robot babies. I was planning on having kids. Even though I had already been told that I probably shouldn’t have children, this extra wrench thrown into my medical mess hit me hard. I hated that doctors thought I wasn’t planning on having kids as if it was my choice.
I’ve recently switched medical teams, and I am trying to stay optimistic about a treatment that lays ahead of me. Males have heavily dominated the medical field that I have experienced so far. I don’t think there is anything wrong with male doctors, and I wouldn’t refuse treatment from someone because of their gender. However, I believe that it is important for all doctors to know how to speak to a patient correctly.
- Try to treat them as an equal and involve them in their treatment.
- As a physician, do what you can to empower your patient.
- Remember that living with a life threatening illness is difficult.
- I know it must be taxing to see so many people with severe conditions, but you can’t let that hinder your ability to be compassionate.
Behind that diagnosis is a real person, with feelings, a family, and a life they’re trying desperately to salvage.