Tuesday, September 9, 2014

Navigating the Medical System

This is an extension of a recent post, but in this one I want to discuss some strategies I have learned to cope with the frustrating process of diagnosis, treatment, and management. I often think about what I wish I had known when this bizarre adventure started and if that information would've helped me navigate the medical system better. I hope this information is useful for the chronically ill and the healthy. This is also a collaborative post that includes the voices of some other POTSies who share their experiences as well.

I had no idea what I was getting into in 2011, but since then I have learned how to be a professional patient, how to talk to doctors, and how to try to get what I need from a broken medical system. Here are a few things I have learned over the last four years: 

 1. Be Prepared

Before I got ill, I lived in a world of make believe in terms of what I thought doctors and Western medicine could do. Shows like “Mystery Diagnosis” are great for raising awareness about rare conditions but they can make the process of diagnosis for complicated conditions seem so fast and complete. There’s always a happy ending. I know now that this is something of a fantasy. I was better off waiting for my entrance letter to Hogwart’s School of Magic than expecting diagnosis and treatment to be an easy process.

I have gone to maybe 200-300 or more appointments over the last four years and been on the endless hamster wheel of diagnosis and treatment that long also. The process is mind-numbing: see a doctor, wait a few weeks and do a test, wait a few weeks or months and see the doctor again, wait a few weeks and do a test, wait a few weeks or months and see the doctor again, get sent to another doctor, start the process over. Over and over.

When you see a doctor, you are usually one of maybe 30-50 patients that doctor is seeing that day. You have 15 minutes to communicate what a hot mess your life has become and then you are sent on your merry way. I have learned the hard way the Boy Scout’s mantra of BE PREPARED. Write down every symptom and every question that you have. Maximize that brief time. Start thinking about the next appointment, test, or referral and ask about your doctor about it to keep the momentum going because the system is prone to inertia.  Research the procedures and tests you will do to figure out what questions you have.

When my symptoms started, my primary doctor I had then didn’t believe me so I had to wait a long time before I got to see any specialists. So after the treatment he gave me made me worse and he ethically had no choice, I saw about 15-25 different specialists over two years and eventually realized I needed to go to a research hospital. It was one of the best decisions I ever made. This sped along the process because these doctors are better equipped to deal with complicated conditions.

Patients with complex conditions that affect multiple systems in the body have to suffer through fragmented care, meaning they see specialists who can treat one symptom but no one looks at the bigger picture. This is not your doctor's fault; it's unfortunately the way the system works. This delays diagnosis and treatment. This also means that the patient, who is suffering and ill, has to coordinate his/her own care. I spend a lot of time figuring out which test/appointment is next and being the line of communication between my doctors despite not having a medical degree, jumping through endless hoops while being ill. Did I mention being sick is a bitch?

2. Learn the language and educate yourself. Be your own advocate

The thing that makes me the most rage-full is that almost every person with dysautonomia has had to suffer through the “it’s all in your head” trap. Imagine suddenly dealing with disabling and even life threatening symptoms, being afraid, and coming to your doctor to ask for help only for him to tell you, basically, you are imagining it. This experience is almost universal for dysautonomiacs. I believe the fact that it affects mostly young women is part of the problem, but I’ll discuss that more another time. Even after all of these years and the definitive proof I have, I still deal with invalidation from doctors. I’m starting to think that it will never go away.

Therefore, educating yourself and presenting yourself as an informed patient is essential. This is daunting when you are very ill, but it is necessary. Learn the language related to your condition. When I talk to doctors I use words like “autonomic dysfunction,” “differential diagnosis,” “orthostatic intolerance.” Speak their language and more than anything else, advocate for yourself because no one else will do it for you. Refuse to accept the “it’s all in your head” trap and insist on being heard. Depressingly, fighting the medical system can sometimes be more difficult than battling your own illness.

Here are some great suggestions from other POTSies:

Jorden Chelsea describes the obstacles of invalidation from doctors:  If I would've known then what I know now I would have made appts with endo rheumatology geneticists and autonomic specialists the exact day I got my diagnosis after my stress test. I wouldn't have ignored my symptoms for years and I wouldn't have accepted the misdiagnosis of anxiety from anyone, you know your body best but sometimes I've seen patients completely brush off a symptom they have if a doctor says it's nothing. Ask doctors who they know that can help with dysautonomia and don't be afraid to do your own research and present it to the physician you are seeing. Also talking to others who have the same issues within the area is helpful for finding qualified mds. Definitely compile a list of every single symptom you've experienced prior to your appt even if it seems unconnected. If I could go back I would not have stopped going to the doctors being persistent it took 6 years from the onset of symptoms to the slow progression for them to even order a stress test partially because I kept being told I was fine so I did not stay on top of appts.”

Christy Doe also offers some good advice: “Never go alone to an ER or doctor is my best advice. Then they have to treat you with respect and the dignity that you deserve. And there is a witness.”

Jessica Emerson reiterates this: “I've finally learned to stop going to appointments without a witness--some argue it makes you look funny..."Why does an adult need someone with them?" Because my memory and concentration are next to nothing by the time I've made it inside the exam room. Something healthy people can't understand.”

   3.  Learn the appointment, testing, and referral process

The medical system is slow, bogged down, and will work against you. It takes a lot of time, money, and energy to navigate it, which most sick people are in short supply of. Find out if you need to get a referral from your primary or if you can make the appointment. Because there can be a huge wait time for appointments, tests, and referrals, it is important to make them asap. You can also get on a waiting list and that may speed up the process. Anytime I have gotten a referral, almost inevitably I have not heard back about it. I always call to make sure the doctor’s office received it and try to set up an appointment. Sometimes a referral can get lost and eventually it expires. You could have to start the process again. Don’t be afraid to call and find out what the status of your referral is and if there is anything you can do to speed the process along.

When you finally get the referral and set up a test, you get to enjoy the fruits of your labor. I am not scuba diving here. I'm getting a VNG (videonystagmography). I really can't recommend this one.

4. Taking ownership of your own health: research, make connections, educate yourself  

Finally getting a diagnosis and getting off the hamster wheel is not the end unfortunately. Very few doctors will take the time or have the time to explain all of the details of your condition to you. You will have to gather information yourself. Connecting with other people online who have your condition is important as well, especially with rare conditions. Knowing there are people out there who deal with the same struggles is important for anyone. A word of caution: there has to be balance when researching and making connections. It is easy to make yourself crazy researching and sometimes I find that it is necessary to disconnect and take a break from thinking about being ill to focus on living.
      5.  Remember what you are fighting for and remind yourself of it from time to time

I have a had a few moments the last year of asking myself  “Why do I keep doing this? Why do I keep going through this?” I think we suffer through this process because we remember what it was like to have quality of life and to participate in that life. We remember what we have lost.  I don’t just suffer through this process for myself. I do it for my husband, my family, my friends, and all the things I still want to accomplish. You can write down for yourself who/what you fight for, and remind yourself from time to time that hopefully, in the end, it will be worth it. 

In the meantime, focus on what you can control and carve out a piece of happiness and joy where you can.

We can lament all day that the medical system is a for-profit system (in the US at least) that sometimes does the opposite of help patients and in which some who need care the most are denied access to it. We can cry foul that the undiagnosables with obscure illnesses must suffer because there is no profit in treating obscure illnesses, but this is not productive.
We have to work with and against the system as warriors. 

It even works against doctors. My primary doctor confessed to me the other day how much the system gets in the way of the quality of care he can provide patients. Luckily, we are living in an age when health records are digitally stored and more doctors are communicating with each other and their patients using technology. Technology has really helped the patient be involved in the process. The US is working on making health care more accessible and affordable. Patient advocacy and patient participation are becoming more prevalent in medicine . There is hope.

Your health is sacred. It deserves protection and cultivation. Don’t let anyone or anything intimidate you into thinking otherwise. And so we beat on, boats against the currents, keeping up the good fight.

 A patient with Crohn's Disease is working on a great project patients with chronic illnesses can use to keep track of their symptoms and treatment. You can find it here.


  1. So much good info. I learned most of this the hard way and I still feel weird having my mom go with me to every appointment. But now, I come prepared and instead of shutting down when invalidated and told my condition can't possibly be causing my pain and illness, I fight. And I figured out recently that I have to assemble my own avengers and I ask them to talk to each other. I also have a nurse practitioner who simply dies medication management for me, because many doctors don't take the time to check what you are already taking and I've had some serious complications from that alone. So far, it's working.

    1. What huge relief that you finally have someone who can coordinate your care. That must take so much pressure and stress off for you. Glad someone finally can help. The universe owed you one ;)

  2. This is such an important topic. Even the healthy need to be aware of this because health can be a fickle bitch. Fantastic post. You really reveal how much strength it takes to be sick.

    1. Thank you! I agree. I think even the healthy need to know what a clusterfuck the system is. Before I got ill, I thought the sick could get help with readiness and alacrity. I had no idea what an endless battle it was.

  3. I am trying to figure out what to do when you advocate for yourself and you continually get shut down by the people who are supposed to be helping you who won't educate themselves on your condition.

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