Hello dear friends!
I know that I can’t be the only one who fights to feel heard and respected and taken seriously in our modern medical system. For a society that is just now coming around to acknowledging ME/CFS as a real illness and not the “yuppie flu” or worse, “all in our heads”, it’s tough to find a primary care provider who is well-equipped to support our healing!
Instead of approaching the doctor’s office like a sinner desperate for a savior, stand up and demand quality healthcare and a physician who believes you, listens to you, and encourages your individual journey. This means doing lots and lots of homework, while maintaining a sense of yourself and not compromising your needs. I’m a huge fan of “interviewing” potential health providers to find one that jives with you, your lifestyle, and your expectations. It may take a little longer and be a little more tiring at first, but trust me, it will be worth it! There’s nothing better than walking into a medical office knowing you are going to get the help you need and deserve.
Here’s my suggestions for finding a doctor that is right for you:
1. Tune your expectations
If you’re newly ill or are experiencing new symptoms, it may help to do a little clarifying journal exercise. Write down your top three most debilitating symptoms, three things you expect to “get” from your medical care, and three healing modalities you’re open to trying. This can act like a filter to help narrow down the choices to benefit you the most.
2. Do lots of Internet research
Just a simple Google search of doctors working with ME/CFS can yield quite a bit, as can perusing local community forums for their recommendations. If you are lucky enough to live near a major research hospital, check there as well, since they usually have physicians and nurse practitioners that are familiar with difficult-to-treat diseases.
3. Ask the right questions
Contact several different doctors’ offices and simply ask if they think they can help you on your quest for wellness. Ask if they are familiar with your diagnosis/set of symptoms, what modes of healing they practice, and what their track record is with treating people like you. You don't want to be the first patient they've ever seen with your particular condition.
4. Be practical
Only look at health professionals who work in your area and those that take your brand of insurance (or those whose services you can afford out of pocket!). I can’t tell you how many disappointments I’ve had finding doctors and therapists that I fell in love with and couldn’t make the logistics happen. Most of us with chronic illnesses can’t handle long car trips and cannot afford paying full price for treatments.
5. Come prepared
If just the thought of having to explain every little thing to a new provider makes you cringe with exhaustion, consider writing it down. Compile any recent exams or blood tests you may have had, along with a list of your current symptoms and medications/supplements. You could go even further and make a “patient resume” of sorts, including your photo, basic information, and everything else I mentioned. Most doctors will appreciate your effort and will help them keep accurate and detailed records.
6. Recruit a buddy
I cannot tell you how valuable it was to have my partner accompany me to my hospital and doctor’s visits. Having someone there who can be your advocate, ask and answer questions, and provide emotional support is an incredible gift that can make navigating the healthcare system so much easier. If you have a spouse, sibling, or friend who can hold your hand during office visits or medical tests, don’t be afraid to reach out and ask for help. Discuss your “strategy” before you arrive, and they can help you get what you need out of your medical appointments.
Bonus tip: Many health insurance companies will try to fight procedures and visits for ME/CFS patients (or anyone else with nebulous symptoms), and a professional patient advocate can help mediate those issues. If you are struggling with a serious illness, multiple hospitalizations, or insurance complications, you can find an advocate here or here!
It can be extremely scary in the big bad world of medicine, especially for those of us who have less-recognized illnesses or haven’t even been diagnosed yet. If that’s you, please don’t give up- you deserve to have quality healthcare and moreover, you deserve to have a doctor who listens to you and takes you seriously. CFS-savvy doctors do exist! They just require a little more effort to find.
I wish you the absolute best of luck in finding your doctor love connection!
What has been the hardest thing for you in selecting a health provider?
~ Hoping you feel as well as possible ~