I had to physically pull myself through the doors by the time I ended up in the doctor’s office. I was experiencing an intense flare-up of symptoms, with fatigue that felt like a steam roller was parked on my back.
When I started a conversation with the doctor regarding my treatment plan, I realized he was talking to me, not with me. He couldn’t carry a dialogue with me.
I brought up my specific condition—which I specialize in—and was assured it wouldn't make a difference to his treatment plan. On my third attempt to discuss specifics, he actually raised his hands in an effort to physically stop the conversation.
I was sick, I was tired, I needed help, and I couldn’t fight anymore. I felt my will power fizzle away, as my advocating voice was too exhausted.
He wasn’t going to listen to my concerns but somehow he was sure he could help. In that moment, all the breath and fight left me and I said, “Ok, we’ll try it.”
Six months later, I am still working to recover from just two weeks of his treatment, which I stopped early. Apparently, my body has a much stronger voice than my inner self does at times.
In these past six months, I have spent many moments shocked at my own behavior—behavior that I have preached to my own clients to not fall into. I realize, now, that telling someone to advocate for themselves is an empty statement, especially to those drained from chronic illness.
So I sat down and had a conversation with myself on how to advocate for yourself when you’re too tired to fight back. Here’s what I came up with:
Find your voice or find your support (someone to be your voice)
Having support with you can be comforting and empowering, especially when you meet a new doctor. Have a hand signal or gesture ready if you start to feel uncomfortable so your support can chime in. Voice your major concerns before the appointment with your support or show them your plan, so you’re on the same page.
Make A Plan and Prepare
Be well informed about your diagnoses. Look for research articles or information from reputable sites (like peer reviewed journals and research-based foundations focused on your diagnoses) on what is and isn’t working for similar patients and specialists in. Write down what you do and don’t feel comfortable with regarding treatment before you go in.
If the meeting isn’t going as you were hoping, take a few deep breaths. You shouldn’t feel rushed when trying to make decisions about your health. Try and slow down the speed of the appointment if you can.
If something doesn’t feel right to you, it’s ok to say no. Obviously, if there is something life threatening, the conversation should continue. If things can wait a day or two, ask for some time to think about the treatment that’s been mentioned. Use that time to research, ask other professionals, or talk to others that may have gone through the treatment with your similar condition.
Have a Back-Up Plan
If you did not feel a connection with the practitioner, have another option in place. You may be able to talk with someone within the same practice to find a practitioner better suited to your needs. Research in your area to find other practitioners to see if this one doesn’t work out.
Your medical plan should be all about you. You should understand and be comfortable with all that is happening both to and around you. Don’t give up on your own voice, no matter how tired it may seem. The whole of you needs to be strong throughout your illness and healing journey.
Dr. Patty Stott is a holistic health practitioner and physical therapist specializing in orthopedics and chronic illnesses including a specialty in Ehlers-Danlos Syndrome. To treat the whole patient, Dr. Stott has training in Functional Medicine, Reiki energy work, and visceral (organ) manipulation. She's available for in-person and telehealth appointments at her practice in Arvada, Colorado. Learn more at www.elevationwellness.co.
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