Misdiagnosis & Patient Advocates
This past year we have talked to many families with similar stories. Most have seen the same doctors - and share the same stories of frustration. Recently we met a family with a teenage daughter going through testing for POTS with the very first neurologist we saw. We talked briefly about POTS and the symptoms and agreed to talk again after their daughter's tilt-table test. I had been dumbfounded when the doctor told us Meghan's issues were due to anxiety and that she needed to see a therapist. Two years later, that doctor told this family the same thing. I was angry and appalled. Two more families that live within miles of us have similar experiences.
I remember sitting in many waiting rooms watching other patients and families. I wondered how they were able to keep going. I wondered how they dealt with the questions without answers. How do we fix this? How do we change the perception of invisible illnesses? How do we find doctors who can help? So many patients that need an advocate to fight for them...
I like the article: "Why the Fight for a Diagnosis Matters" because it highlights the "fragmented" care that someone with an invisible illness gets. You go to a cardiologist because your heart races, they send you to a neurologist because they can't figure out why it races, who then sends you to a therapist because it's all in your head. You have to stop on the way to see a nutritionist because they are certain you aren't eating right. And round and round you go - leading you back to the doctor who says "it's all in your head" (another great article). People are left traveling hundreds of miles to see a specialist or do nothing because they can't afford it or don't know how to find a knowledgeable doctor.
Finding an invisible illness diagnosis is like taking your car in for repairs. You explain to the mechanic that you have this lurch in your transmission each time you accelerate from a stopped position. They ask you lots of questions - was it cold out when it happened. No. Did you forget to take the parking break off. No. Does it occur at higher speeds. No. They run tons of tests - plug it into their tell all diagnostic machine. When you go back to pick it up, they tell you all results were normal and the car is fine. They even took it for a test drive and couldn't get it to replicate the problem. So you leave. And of course...it lurches forward at the next stoplight you come to... That's what it's like. Over and over. Meghan gave so many viles of blood. 50? Maybe more? They would run 20 different tests on her blood at each stop. We told our story over and over and over (I should have recorded it and handed out videos) - each time thinking it had to be the last.
Some are lucky. Because there are some really great doctors out there. Unfortunately, you may have to search to find them. And you can't give up. Dysautonomia International is a great patient advocate - a great place to find information and to find a doctor - see Dysautonomia International's Doctor List here. Instead of spending time bouncing from doctor to doctor, go directly to someone who is knowledgeable (not just someone who says they have heard about POTS). Get the diagnosis you need and have them work with your own doctor. Or help to educate your doctor - tell them about Dysautonomia International and it's doctor education web page. Tell them about their yearly conference that has top doctors from around the country in attendance. I have found a mixed reaction in helping a doctor learn about new things. They either like it or they don't - the good ones are open to hearing what you have to say. Ask the doctor if they have read about the new research on POTS and how they feel about it - make sure their view agrees with your own. Even a few of the doctors on Dysautonomia International's list do not agree on treatment approaches. Be sure to also read about being the empowered "epatient."
Lyme's disease is a great example of an invisible illness that doctors and the general public are finally starting to take seriously - although a lot of controversy still surrounds it. Lyme's disease is thought to be one of the triggers for POTS (which is probably the case for Meghan) and the symptoms do overlap. Both conditions affect the nervous system. We need to keep talking about POTS and continue to get the word out. Sjogren's and lupus are also examples of invisible illnesses that have been in the news. Venus Williams and Kristen Johnston from Third Rock from the Sun have recently talked about their fights. Avril Lavigne and Alec Baldwin have shared their stories with Lyme's disease. The more people learn about it, the more people understand and want to help. It is still hard to fathom that this continues to be the norm for those searching for a diagnosis - millions of people in the U.S. suffer from an invisible illness. Millions. Does it have to be this hard?