If you would have told me two years ago that I would be sitting here writing about being your own health advocate, I would have probably laughed. I doubt most people even think about this topic, I know I didn’t until I had to become one.
The Beginning Of My Health Journey:
What first started as back pain and TMJ, suddenly progressed into chronic pain, edema, high blood pressure, and much more. I had labs and MRIs with great results, then sent to a rheumatologist. At my first visit the doctor kind of shrugged me off, he told me to try Cymbalta and exercise because surely a healthy 29 year old just has a bit of fatigue because she’s a mom and depression can mimic many other illnesses.
As my symptoms progressed so did my patience, I finally spoke up and voiced my concerns openly and honestly with my doctor. After this conversation he had a much better sense of what was going on with my body and that there was something wrong, we just had to find the right test. Fast forward a few weeks and after a trip to the ER got me a cat scan, they found “inflammation” and told me to follow up with my specialist.
He got me in to see him on a Monday because of course my ER visit was on a weekend. He walked into the room and said you have an aneurysm and I’m referring you to a cardiothoracic surgeon. The rest of this story can be read here. (This rheumatologist is still my doctor to date, and was a big reason I’m alive)
Becoming My Own Health Advocate:
My post-op pacemaker care has been less than stellar, at first I chalked it up to pandemic issues but then when issues arose the doctor was dismissive of my concerns. When I say dismissive, I mean he had an ego the size of Texas and assured me that he knew what he was talking about because he was an engineer. I don’t have a medical degree but, I am knowledgeable about my conditions and had notes/vitals to back me up. Plus I’ve lived in this body going on 32 years, I know when something isn’t right.
Well, long story short I fired him. I had my local cardiologist refer me to a new electrophysiologist, I was seen quickly and the doctor actually listened to me and with a simple medicine removal my symptoms have improved greatly.
If your battling health concerns or a care taker for someone, being/having a health advocate is so important. Keep on reading for my top 5 tips to becoming your own health advocate.
- Be Prepared: Before any doctor’s appointments write down your symptoms, concerns, and any questions you have. It is incredibly easy to get sidetracked and forget to mention something or ask your questions.
- Be Knowledgeable: I’m not saying you need to go get a medical degree but, once you have a diagnosis it is great to learn what you can about your condition(s) and be proactive in your care plan with your doctors.
- Speak Up: If you feel like you are not being heard, speak up. Do not be afraid to tell your doctor that they are wrong, Don’t be afraid to get a second, or third opinion.
- Trust Your Gut: You are the only person who really knows your body. You know when something feels off, you can feel pain- even if it’s invisible. You have lived in your body, your entire life, you know it better than anyone else. When I was having pacemaker issues that the first doctor kept on telling me it was because of low blood pressure. I knew this wasn’t correct, my blood pressure had been stable for months. Trusting my gut and getting a second opinion was the best decision- and now that my issues were addressed I’m feeling much better.
- Keep A Medical Journal: Keeping a medical journal is extremely helpful, not only can you use it to write down the stuff I mentioned above but this can hold copies of test results, medical records, medication lists, symptom tracker, and more. When I first started my journal I used a binder and page protectors to organize all my information and could take it from doctor to doctor. I now use my Ipad for this but, you can use whatever you have on hand to make your journal.
Living with a chronic illness (or being a caretaker) can be so hard already, the last thing we should have to worry about is getting decent health care. Have you had doctors dismiss your concerns? I’d love to hear your stories, and I hope my story and tips can help you on your journey.