I feel like most people with complicated chronic illnesses deserve honorary medical degrees. Every week I spend countless hours reading medical journals and researching different illnesses. The number of doctors I have had to educate on my condition is astounding. I actually left my old PCP because he had never heard of postural orthostatic tachycardia syndrome (POTS), and didn’t seem to have any interest in learning about it. I see a cardiologist for my POTS, but its important that the doctor who sees me most often at least have a basic understanding.
As you know, when I was first diagnosed with POTS, the doctor walked in after the tilt table test (as I was still strapped to the table), told me I had POTS, to drink a lot of water, and that I would never have kids (which is incorrect – I have POTS friends who are mothers). Needless to say, that was the last time I saw that doctor.
Towards the end of last year when I suddenly dropped a lot of weight, I had a conversation with a doctor that went like this:
Again, last time I saw that doctor. I was born with good genes and have almost always been at the target, or even slightly under, the suggested weight for my height. There’s something wrong when I lose ten pounds without trying.
Most recently, I saw a doctor about imbalanced hormones. As you may remember from a previous post, I have had an awful time getting off birth control. It has been over 14 months, and I still have crazy symptoms. I finally made an appointment with a doctor to discuss it. After describing all of the difficulty I have had since I stopped birth control, her advice was to go back on birth control. If that’s the only answer, then great, I’ll go back on. But, shouldn’t we try something first? Check my hormones, run standard blood tests to make sure it isn’t something else? I left that visit nearly in tears – probably 70% from the hormones, but a good 30% from frustration at the doctor.
Sometimes you have to think out of the proverbial medical box and take matters into your own hands. I ordered my own hormone tests for estrogen, progesterone, testosterone, DHEA and cortisol. Can’t say that I’m surprised the test confirmed that I have a major imbalance going on. I called another doctor to make an appointment, and was told I’m too young to have a hormone imbalance because I’m not going through menopause.
Many POTS patients are first told that their symptoms are just from anxiety, or that they’re just seeking attention. Friends, you know your body better than anyone else. If suddenly something is happening that did not happen before, get it checked out, and don’t let any doctor tell you “it’s all in your head.” It’s not.
Being chronically ill is an ongoing uphill battle. You probably fought to get an accurate diagnosis. You’ll fight for adequate treatment. You’ll battle to be heard and believed. You’ll never stop fighting, but you’ll be stronger because of it.
Go into your appointment with a list of topics you want to discuss and tests you want run. Be transparent. If you’re disappointed in a doctor, let the doctor know how s/he failed to meet your expectations. If you have a great doctor, let the doctor know s/he is appreciated. If a doctor isn’t working for you, fire him/her. Your doctor works for YOU. Expect the same quality of service you would demand of yourself.
As I’ve said before, life is too short for bad sex, cheap beer, and doctors who are idiots. Write that down.
Some of the best appointments I have had were with alternative medicine practitioners. Earlier this year I went to a naturopath who was exceptional. She spent 45 minutes listening to me, asking a detailed history. She was very compassionate and, although she didn’t know much about POTS, she knew a lot of about the autonomic nervous system (ANS), and thus understood how a dysfunction of the ANS would affect my body and, more importantly, my life.
If you’re having difficulty finding a doctor who understands or who is willing to treat you, I encourage you to look into alternative medicine. Insurance often does not cover alternative medicine practitioners, although I recommend contacting your insurance to be sure. Mine will pay for acupuncture, but not other holistic type of treatments. Finding answers, being heard is priceless. I think the best treatment comes from a team of both traditional and holistic doctors who complement each other’s style, and a knowledgeable, confident patient. Be your own advocate.
Friends: I’d love to hear about your experiences with doctors, traditional or alternative.
“I love the person I’ve become, because I fought to become her.” – Kaci Diane
Smell ya later.