Three Reasons You Need To Be Your Own Advocate

‘If you have any issues, don’t bother going to the ER.  Just go home and die.’  

Teri had lost her cardiologist and was meeting a new one when he said this to her.

Can you imagine?

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.

1.  Difficulty of finding doctors

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 ‘do no harm’ promise, adding to the emotional and mental suffering experienced by rare disease patients.  Some rare diseases are seen as controversial or a trendy diagnosis (imagine wanting a rare disease?  Seriously?) adding to the difficulty of finding a doctor to work with.

In a recent poll on Facebook, people reported seeing up to 100 doctors before finding the rare doctor who could and would work them.

More doctors willing and able to treat rare diseases are needed as well as respect and acknowledgment of rare diseases within the whole medical system.

2.  Rare Diseases are neither straightforward nor easy to diagnose and treat.

Even a doctor who is knowledgeable about a rare disease can struggle to diagnose and treat it.  The testing may be expensive and is often inconclusive.  

Only 5%, of the 7000 rare diseases, have an FDA-approved treatment with all other treatments being prescribed off-label. 

On top of it, each rare disease patient is unique and requires personalized treatment with a lot of trial and error to find what works.   

Without an agreed-upon standard of care for diagnosis and treatment for each rare disease, you are left with the doctor’s professional and personal preference. 

Further research on rare diseases is needed along with a systemic way to quickly and easily share the results with all doctors.

3. Betrayal and Medical Trauma

It can take 6-8 years, or even longer, to get a rare disease diagnosis. By the time of diagnosis, patients have experienced significant institutional betrayal - betrayal by the medical system and individual doctors.  

Sadly, the betrayal doesn’t always end with a diagnosis and can be an ongoing issue resulting in a lack of care and medical trauma.

In a recent study of EDS patients, They’ve been BITTEN: reports of institutional and provider betrayal and links with Ehlers-Danlos Syndrome patients’ current symptoms, unmet needs, and healthcare expectations, 45% of the patients self-reported experiencing institutional betrayal. 

The system needs to change to prevent the betrayal and trauma patients with rare diseases are experiencing.

Change is slow but

The medical system should be better and do better at providing care for rare disease patients but change within the medical system is slowww.  You can change your medical care now by learning how to safely and effectively advocate for yourself.   

So, what happened with Teri?  

In the past, Teri would have been emotionally distraught, traumatized, and felt defeated after hearing this but this time she wasn’t. 

What changed?  She had the skills, confidence, and support to calmly say ‘wrong doctor’, ignore the doctor’s terrible advice, and work with her PCP to find the right doctor for her. 

 What can you do?

There are strategies and ways to navigate the medical system that help you minimize these issues and their effects on you.  You can learn to be calm, confident, and in control of your care when you are given an understanding of the medical system, effective techniques, and the right support.

Come join the Healing Rare Disease Health Care FB Group to learn more about navigating the medical system and being your own advocate so you can get the right care for you. 


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