One of the most important lessons to learn, whether you live with chronic illness, or not, is how to be your own medical advocate.
Living with multiple chronic illnesses, I thought I’d heard it all, until a cardiologist refused to listen to my health concerns, and told me to, “Come back when you’re sick enough to treat.”
I mean… what?!
An Ounce of Prevention…
My aunt died from a massive heart attack two days before Christmas 2011. The silent killer struck in her early fifties, and gave zero warning. She isn’t the only woman in my family to have experienced a major cardiac event in her fifties. My cousin passed the same way a couple months earlier, while another cousin had a massive stroke a few years later. Luckily, she is still here, an inspiring warrior who amazes us every day. Clearly, a strong family history is present, and I had shared that information with my cardiologist and her PA.
I also have autoimmune illnesses that can affect the heart. More common knowledge shared with this particular doctor.
Illness is lonely, but it’s downright terrifying when you don’t have a good team of doctors in your corner, so I have spent a great deal of time gathering a solid team, and try to be as honest with them as I can. All of these things work in tandem to keep me at my healthiest.
So, as soon as I noticed weird, new cardiac symptoms, I monitored them. When they didn’t resolve, I did what I thought would be best–I called my cardiologist for a checkup.
I met with her concerned PA, who took thorough notes, and she said she wanted further testing. Then, the doctor breezed in, informed me that I was having zero heart issues, and said that since I am only 35, insurance won’t cover annual testing, so I was being “released” that day.
In My Mind I Screamed
“What do you mean ‘released’? I’m trying to find answers here, not act out a scene from ‘The Giver’.”
Outwardly, I said nothing.
I’m still mad at myself because I didn’t advocate for my body in that moment.
It wasn’t the first time I have been dismissed by a doctor, so I should’ve been well-equipped to fire off several choice responses. Years ago, before I received two of my autoimmune diagnoses I was dismissed by specialists for nearly a decade, living in excruciating pain, with untreated fibromyalgia and Crohn’s disease, amongst other issues.
Women are routinely dismissed for “undetected” invisible illnesses. This is especially true if chronic pain is involved–a symptom that’s ignored, or chalked up to anxiety and stress in busy moms.
No matter how many times I have experienced that violating level of helplessness, it still leaves me in utter shock.
Had I not just shared a detailed conversation outlining all of my issues with the cardiologist’s PA? I even overheard the PA relaying it all to the doctor in the hall from behind the closed door moments before the doctor came in.
She Had Written Me Off Before Even Setting Foot in the Room
As I finally started to object, the doctor scribbled something on my chart and said, “Okay then, I won’t need to see you again until after menopause.”
But… My aunt was barely there when her heart gave out.
With a flash of teeth, and a swish of a white coat, the doctor was gone. That was it. No testing. No discussion.
Hot tears stung my cheeks as I walked out of her office. Frustration danced with anger over the waste of time and waste of a copay. Then doubt set in. Maybe it really is just nothing…
The seeds of doubt that a dismissive doctor plants are the worst offense.
A Pound of Cure
My anger died down, as I drove home, along with the doubt. While I dropped the ball this time, I do know how to advocate for my own medical needs, and have been doing so my entire adult life. This was just a small obstacle I would overcome and grow from.
I know this body I live in. It’s up to me to advocate for it, and focus on self-care while seeking answers.
I reminded myself that I had the option to call my amazing primary doctor. After explaining what happened, she would connect me with a new cardiologist who would hopefully listen. I wouldn’t give up until someone did, and neither would my primary.
Be The Change
Once I had my plan figured out, the only emotion I had left was pity for the cardiologist who had dismissed me.
I can’t imagine how frustrating it must be for doctors to be so limited in their scope of treatment. How horrible it must be to turn patients away in order to cover themselves, due to insurance and paperwork.
I pictured this doctor as a fresh-faced resident, years ago. Maybe she wasn’t dismissive back them. Maybe she would’ve taken on a medical zebra like me.
I will never know why she turned me away so coldly. Perhaps her workload was just way too much that day–or she had just had a very difficult conversation with another patient.
In the end, it doesn’t matter.
What matters is how I advocate for myself in the future. My silence was my own fault. I won’t allow for that to happen next time.
Please remember that you always have the right to fire/hire any medical professional, because they work for you. There are plenty of wonderfully skilled healers in this world, who care as much as you do. The trick is finding them. This is all part of being your own medical advocate.
It makes sense to help patients while they are still within a proactive stage, as opposed to waiting until damage control is needed. I cannot wrap my head around our society’s current status quo of “if it’s not completely broke, don’t fix it”.
It’s a model I refuse to follow, and I hope that you won’t be content with it, either.
We all deserve more.
We live in a fast-paced society. Between work, raising a family, keeping up with friends, and keeping a house in order, it can be easy to put your health last. Here are some interesting reads with tips on living your healthiest life:
- How to Feed Your Family Organic On the Cheap
- Take Care of Yourself First (& Be a Better Mom!)
- 5 Simple Salad recipes to Eat Healthier in the New Year!
Are you your own medical advocate? How do you advocate for your health? Share your tips in the comments below!