I had to move past my doctor to seek the help with my lymphedema that I needed. I did that and I got the advice and support that I needed. So far so good. I’ve always been able to access my team in the city that is 2.5 hour away. I haven’t been in an emergency situation where the physician on call needed to know about lymphedema. I’ve always been conscious and knowledgeable enough to prevent harm being done by the medical profession.
There is no guarantee that I will always be so lucky. I knew enough to challenge the worker that thought she would have to draw blood from my affected arm and I was prepared to stop her if she proceeded. No one has argued as I’ve directed their blood pressure cuff or their needles away from my lymphedema arm.
The closest I’ve come to harm was from a dentist who thought he could tap my arm with his pencil as he quizzed me about my cancer checkups! He did no harm with his pencil but had my pain level been higher he would have.
“How do you know that I’m not in pain?” I asked, because despite his white coat and supposed professional conduct he was being very ignorant. Then I asked him if he wanted me to punch him. Okay. It was said before I thought about the words. I am still unsure of how I should have handled it or what action I should have taken after. He was crossing a number of boundaries and the unexpectedness of this situation threw me. Why would a dentist need to know if I got yearly mammograms? What right did he have to tap on my arm to ask why I wore compression garments?
Physicians are sometimes unaware of the condition and some view it as an untreatable cosmetic concern of no particular interest to them. That is a frustrating situation for the lymphedema patient, who sometimes is not properly diagnosed, as often times they are given very little in the way of helpful management suggestions. Patients can be harmed by poor care.
I’ve read that the average time that a medical professional receives in lymphatic vascular system is about 15 minutes out of their four years of training. The misconception is that lymphedema is a rare or unimportant condition when in fact it is common and serious. Also it is poorly recognized and unacknowledged. Work is being done to change the situation and make lymphedema knowledge widespread and effective.
So like the general public, the medical profession needs a lot more education to understand lymphedema. It may have to start with one patient talking with their doctor, but it can be and should be much more.
There are people working on that very thing and that is why the provincial associations of lymphedema serve such an important role. These provincial associations are often led by people who have personal lymphedema experience. Their sole purpose is to support patients and their caregivers. I support them and their efforts, I hope you can too. They are a valuable member of the lymphedema team.