Unlike most people who will write about politics for today’s prompt, I hate politics, so I will avoid talking about it on my blog. No, instead, I’m going to write about something I bring up occasionally and is so important for those who are chronically ill: patient advocacy.
Much of my experience with advocating for my own healthcare is told in this blog post, when I sought out a second opinion for my endometriosis to be treated by literally one of the best surgeons in the world. But I have had to pull myself up by my own bootstraps again lately when it comes to getting the care I deserve. (Because healthcare is a right, not a privilege. Ok, some politics, I guess.)
As related in my recent blog post about my diagnosis with postural orthostatic tachycardia syndrome (POTS), it was a fight to get my test results and information I needed to understand my diagnosis. When the doctor’s office refused to call me back after a week and a half of contacting them (as my doctor had told me to do), and told me some crap that it would take 6-7 weeks for the doctor to contact me, I took measures into my own hands and emailed my doctor directly to bypass his office staff. He then called me himself and went over my results and diagnosis in detail, apologizing that his staff hadn’t gotten hold of me. If I hadn’t contacted him, I’d likely still be waiting for answers.
Another key example of patient advocacy in my life just happened yesterday. For a little background information, a common comorbidity with POTS is a condition called Ehlers-Danlos Syndrome, of which there are several types. I have suspected for about seven years that I have EDS type III, which is the hypermobility type. EDS is a genetic connective tissue disorder in which there is a defect in the production, structure, or processing of collagen, which is the “glue” that holds the body’s connective tissues together.
Upon researching POTS, I stumbled across a lot of information on EDS and again realized I have a lot of the symptoms. I meet most, if not all, of the Beighton criteria (I’m not sure about my knees). I am able to do other examples of hypermobility as well. My jaw has subluxated when I open my mouth all the way since I was about 14. I had a left medial meniscus tear in 2002, and acromioclavicular ligament tear in my left shoulder in 2004 (from simply raising my arm), and a pull/tear of a rib muscle in 2013 from turning my upper body (it was either that or a spontaneous pneumothorax, but I just toughed my way through it and never had it properly investigated.) I also had a left internal carotid artery aneurysm that was found incidentally last summer that was stented in November. My joints have always felt “loose” to me and I was prone to injury in my youth, especially in my ankles, as I was a dancer from the ages of 3 to 20. And I can still do splits without needing to stretch first. Other symptoms I display include chronic pain, migraines, GERD, and flat feet.
If I do have EDS, it’s something I would like to get diagnosed and be aware of, as it can affect a woman’s ability to carry a baby to term. It is a condition that is typically diagnosed by a geneticist. I did some digging and asking around and discovered the name of a geneticist in our healthcare system, Dr. P, who has diagnosed others. I gave his office a call yesterday to make an appointment. I was told that due to “unforeseen staffing issues,” he is not accepting new patients. I asked about any other geneticists I could see and was told that Dr. P is the only one who works with EDS.
Well crap. Now what was I to do? Since I am an employee of the healthcare system, I can only receive care from physicians within the healthcare system. So I grit my teeth and took matters into my own hands. I emailed Dr. P last night, explaining my symptoms and the situation. I asked if he happened to know if anyone else could see me about the condition.
I received an email back this morning saying he would have his scheduler call me to set up an appointment with him.
So what’s the lesson here?
When someone tells you no in regards to your healthcare, you tell them no. Resist, and find a way. Because you’re never going to get the care you deserve unless you do.