Self Advocacy for your health…the article that caused a buzz

by / Sunday, 05 September 2010 / Published in Carol's Corner
When I started my practice a million years ago, I knew I wanted to help people create optimal health and to do that I also had to empower them to make their own choices. It’s a tough act but I’m committed to it because I believe if you aren’t your own advocate you will rely solely on the opinions and choices of others who can’t possibly know as much about you as you do. Yes, there are times we must rely on specialists but the point I want to make is this: Don’t allow others to make choices about your health for you instead of with you.

Let me share a little story with you that may bring my point of the importance of self care and self advocacy home. On Friday, September 25th at 9:30 a.m. I found myself unexpectedly at my doctor’s office where she was confirming the breast lump I had found two hours earlier. She looked me in the eyes and said she was worried that with my auto-immune condition, this could be something serious. Further palpation gave her the idea I also had an enlarged thyroid. As more worry lines appeared on her face she asked, “So how are you feeling with your auto-immune issues?” “About the same as always,” I responded. “Listen” she says, “I think we need to run some tests on you and if they come back positive, I want you to be prepared to have an extensive list of specific tests run.” By 5:30 that afternoon, I’d had two ultrasounds, a mammogram and a series of blood panels run.

At 8:00 a.m. the next morning my doctor called me to tell me that not only do I have a lump on my breast, I have one on my thyroid as well. The radiologist said he doesn’t think its cancer but…..She wanted me to see an endocrinologist and a surgeon ASAP. It was too early for the blood test results to be in but by that afternoon, I’ve received another call from her and the news wasn’t good. “You have several issues going on but I only want to give you a preliminary diagnosis.” she said. “There is a strong possibility that you have scleroderma and one of your kidneys is already showing damage. There is also a possibility that your brain and heart have been affected and we need to find out as soon as possible.”
I spent the next six months in and out of doctors’ offices, labs and radiology clinics. I had more tests run than I even knew existed. Every time I went to a new doctor for testing he would look at my preliminary diagnosis on the chart and then he would look down at his shoes and say how sorry he was for me. When the doctors suggested outrageous tests or made outrageous claims I asked what for and why. I asked them to explain their theories and hunches and made sure that I understood them before I made any choices. I said yes to some things and no to those I felt offered no value. I also did my own research rather than checking in with a friend who had a friend who had a similar diagnosis.

I bet you want to know how the story ends and I’ll tell you…..later. Right now I want you to know how relieved my family was to know that I had the situation in hand and that I was staying on top of it. Because I’d been proactive about my health, they didn’t have to worry and wonder about whether or not I would take care of myself. They didn’t have to advocate for me and go look for doctors for me or with me because I’d already found one I connected with long before.

In fact, they didn’t have to do a thing but love and support me because they know that when it comes to health, I’m self motivated. I’m my own health advocate. How about you? Do you advocate for yourself when it comes to your physical and mental health? If not and you need help, have you considered asking a loved one to be your health advocate?

I want to encourage you to spend some quality time getting to know your mind and body! Look at it, touch it and figure out what normal feels like so that when the abnormal shows up you can do what you want or need to do.

Make the effort to find a doctor that you really feel good about. Interview several before you sign on to be a patient and let them know the purpose of your visit. Some of them will be surprised, others shocked and the ones you want to work with will be pleased. Let them know what you are looking for and ask about what is important to you. That way,when and if the time arises that you need care, you will have a doctor you are comfortable with and whose opinions you respect. You won’t have to second guess them because you will have already established your relationship.

I believe there is nothing more important than self care and self advocacy and that is what we are really talking about here. Give yourself the choice to explore options and opinions of others but remember that your thoughts, feelings and opinions are the ones that count the most. And remember too, the most generous gift you can give your loved ones is the care you give yourself.

Oh yeah, so back to my story: While I still have auto-immune issues that I’ve had most of my life, I do not have scleroderma, kidney failure or breast cancer. The thyroid issue is ongoing but I suspect it isn’t going to be of any real concern as long as I remain proactive about my health. Did I freak out along the way? You bet I did but I also made sure I understood what was happening and how my choices could make a difference. They were, after all, my choices to make. What choices will you make for yourself?

If you need help with self care or becoming your own advocate, feel free to contact me.

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