You Might Have to Fire Your Physician
An uncomfortable truth when searching for a Lipedema diagnosis.
When I figured out I had Lipedema three years ago, I didn’t really think about the repercussions of going to my primary doctor and telling him I had this condition. My physician and I have a very good patient-doctor relationship, and he is always open to my bodily complaints.
I was fortunate. When I came to him, he’d already had another patient who was also diagnosed with Lipedema, so he was familiar with the condition.
However, when I talk with women about getting diagnosed, the biggest complaint I get is that their PCP laughs at, dismisses, or flat-out ridicules them with the same message: Lipedema isn’t real, they are lazy/hysterical/hypochondriacal, and they need to diet and exercise more.
If you’ve been reading about Lipedema at all, you know getting a diagnosis is difficult. The problem is mainly because of what I’ve described above.
Most primary care doctors aren’t familiar with Lipedema, and no specific specialists can assess and diagnose us.
The most common responses PCPs give when they can’t figure out what’s wrong with the patient:
Cram your symptoms into a recognized diagnosis, even if the fit isn’t perfect.
Dismiss symptoms as coming from stress, anxiety, or some other emotional disturbance.
Ignore or dismiss your symptoms (again, laugh at, ridicule, dismiss, or make you feel like your bodily issues are all your fault by not being disciplined).
Refer you to a specialist for whichever bodily condition you have complaints (i.e., rheumatology, vascular, endocrinology, gastroenterology, etc. etc. Remember, there are no Lipedema specialists).
When I counsel women on getting diagnosed, I’ve found that when a PCP gets to the point of blaming the patient, stating that Lipedema is not real, or has closed the discussion to further exploring Lipedema as a possible diagnosis, then I have to tell them this uncomfortable truth:
It’s time to fire your PCP!
If you have the ability to choose a different primary care doctor, this may be the time to start looking around. Because if you have Lipedema and you have a physician who won’t work with you, you will not get appropriate treatment for your condition.
But, before you fire your PCP, here are a couple of things you must do first because I don’t want you to be left hanging with no doctor interim.
Check with your insurance about changing PCPs. Some insurances have very small in-network providers, and some may even assign your provider to you (this is common with HMOs and some Medicaid insurances). If you aren’t sure, check with your insurance to see if there are any restrictions.
Call around to see if doctors are taking new patients: With the need for adequate healthcare in our country, there is also a shortage of primary physicians. Even if you find the perfect fit for you, that doctor may not be taking on new patients, so call and find out.
Think outside of the box: Because of the lack of providers, there are alternatives to having an MD for your primary care doctor. Nurse practitioners, Physician Assistants (PAs), and even chiropractors or naturopaths (depending on the state where you live and what your insurance allows) can also take on the role of PCP. These disciplines also tend to be more holistic and more open to working collaboratively with their patients.
Don’t drop your current PCP until you’ve had an initial appointment with your new one. Again, because of the lack of providers, you don’t want to cut off care and end up with no PCP. And there are many other reasons why the new PCP might not work out for you. So, only until you’ve had that initial appointment with your new PCP and are happy with the change can you fire your physician!
This is just the start of your journey to get a Lipedema diagnosis in your medical chart. Having a receptive PCP is imperative for guiding conservative treatment and potential surgery. If you do anything first, get yourself diagnosed and find your treatment team to help you direct your care.
Keep yourself healthy!
Michelle
If you would like to consult with me one-on-one, I offer a 25-minute appointment to help get you started on strategizing a path for a Lipedema diagnosis. Schedule some time with me here:
