Teri had lost her cardiologist and was meeting a new one when he said this to her.
Sadly, I’m guessing you don’t have to imagine it - you’ve probably experienced something like this too.
As a rare disease patient, dealing with the medical system can be both hard and harmful.
Let’s talk about 3 reasons why it is so very important to learn how to navigate the medical system and to step into being your own advocate.
Rare diseases are well...rare. Many doctors don’t know about them or have limited and/or incorrect information about them.
Teri’s cardiologist knew enough about her rare diseases to recognize their complexity but not enough to appropriately handle her care which was arguably worse than not knowing.
Too often, doctors feel that they can ignore the...
You, my friend, are on a journey...
Your destination is rare and not well known.
Your destination is so rare...you need a guide to get you there.
You look around, see a guide and hire them.
But most guides don’t know about the destination, don’t believe in it or they’ve heard about it but try to dissuade you from going there.
One says they know the destination and the way to get there so you hire them and follow them only to find out it wasn’t the right path.
Now you are farther away than when you started.
You have bruises and cuts from being led down that wrong path. Often left to deal with the resulting trauma.
You are frustrated, hurt, angry, irritated, and ready to give up...but you know you need to get to that rare destination.
You discover some locals who have been down the path to a similar rare destination...finally, you find someone who can help point you in the right direction.
You start learning about that rare destination - what it means to you...
You have probably been told that it is important to get and review a copy of your medical records. Up until now, it’s been expensive and often challenging to get them.
For those of us in the US, a big change happened in April 2021, that gives patients online access, without delay, to the medical notes in our medical records.
Beginning April 5, 2021, the program rule on Interoperability, Information Blocking, and ONC Health IT Certification, which implements the 21st Century Cures Act, requires that healthcare providers give patients access without charge to all the health information in their electronic medical records “without delay.”
Medical notes are written by the medical providers as a way to document the appointment and as a communication tool with other providers.
In the past, they...
After months of discussion, you finally talk your PCP into sending you to a specialist. You are expecting a call from the new office but it never comes. You call to follow up and try to schedule the appointment yourself but they tell you that you can't schedule it without the referral.
You call the PCP office but they don't call you back. You are stuck in limbo waiting on your PCP to complete the referral. Every day you wait means a longer wait until you get to see the specialist.
Finally, you see the specialist and they have no idea why you are there - your PCP gave no indication of why you were being sent there.
The specialist writes a dismissive summary of you and your issues, maybe even undiagnosing you of your other rare diseases.
Why does this happen? In this case, your PCP was not filling the crucial roles that help you get the care you need.
We all know that our PCP’s are helpful when we have...
The situation in our hospitals is getting more chaotic so managing and advocating for rare disease care is even more challenging. A hospital is a challenging place for a rare disease patient at any time but the 'no visitor' rule has complicated communication and the ability for a loved one to help advocate for your care.
After dealing with chronic pain due to spine issues, Dr. L, my pain medicine doctor, wanted me to see Dr. S, a surgeon, to see if I needed surgery. Dr. L had been the bright light in my life after I took a fall from my horse and broke 4 vertebrae. He listened, validated my symptoms and concerns, and wanted to know what I felt I needed.
Dr. S was your typical surgeon with little to no interpersonal skills, rushing in, and jumping into his side of the conversation before I was able to get a word in. He looked at my imaging for two minutes, told me there was nothing he could do for me. So far, so good....
He then went into a tirade about how pain meds were evil, that I needed to stop them immediately, and just get on with my life. Go ride your horse and stop worrying about your pain.
With tears streaming down my face, I left the office feeling not only hopeless but ashamed that I needed pain meds.
I wanted to report him and...
Listen - I know dealing with doctors for rare diseases can be awful.
Medical trauma is real...I haven’t met a single rare disease patient who hasn’t
Sadly, we have to kiss a lot of frogs to find our prince (so to speak).
But, when we demonize doctors, we are the ones who are most hurt by it.
YOU have the power and the right to choose your medical care and who you work with. It’s your body, your health, and your life!
You can’t change how each doctor treats you but you can change how you respond to it so you are no longer a victim.
Don’t let one person, who you don’t agree with, have the power to upset you and deny you the care you need.
Protect yourself by saying “Not the right doctor...next?”
Doctors say a lot of crappy things to rare disease patients. ...
Raise your hand if you have ever disagreed with a doctor?
Maybe I should ask how many doctors have you not disagreed with?
How many doctors are happy when you disagree with them?
It can be hard, especially for those us who don’t like conflict, to speak up and disagree with our doctors but let’s talk about why it is so important.
Ideally, our relationship with our doctor is a partnership where we work together toward the same goal but even partners disagree. Disagreements may occur on the goal, testing, diagnosis, or which treatment to be used.
The best partnerships build off the strengths of each of the partners. In this case, you are the expert on your body - what you experience, how it reacts, and your goals. Your doctor is an expert on medicine (in general) - their understanding of the disease, diagnosis, and treatment.
So, as the controlling partner in this partnership, it is...
Do you deal with the effects of medical trauma?
Have you been told you need to get over it and suck it up?
Is medical trauma real?
It started out gradually, one day I noticed my arm was aching and it hurt to write or to be on the computer. Pretty soon, I had a stabbing, unrelenting pain that spread to my neck and shoulder blade - it left me in tears and unable to sleep well. Before long my forearm was screaming in pain and my hand was numb and tingling.
I approached it in the ‘tried and true’ method of just ignore it and it will go away. No luck. I tried resting it but that didn't help either. Soon the pain was so bad I couldn’t use my arm and even walking was uncomfortable.
“Please don’t let this be another cervical disc and stenosis problem or Parsonage-Turner Syndrome, a rare neurologic disease,” I muttered to myself. My cervical fusion in Aug 2019 had gone well but it was a tough recovery and I really...
Your PCP refers you to a specialist, let's say they are a headache specialist named Dr. H (for headache), to get help with your migraines that are common with your rare disease. Dr. H has no experience with your rare disease but is a headache specialist.
After seeing Dr. H, your PCP shares with you Dr. H decided that you don’t really have migraines and that you are a drug seeker.
We all know that our PCP’s are helpful when we have strep throat or need a referral to a specialist. But to be fully supported there are additional roles that are critical for your PCP to be engaged and willing to perform.
“Collaborative Partner - two or more parties engaged and working together on the same activity”
How many times have you brought up an issue only to have your PCP dismiss it and move on to their next item?
You are the main stakeholder in this...