Wednesday, September 17, 2014


Being on extended medical leave has been a strange ride. I spend most days couch-bound and riding waves of anxiety and sadness, trying to stay on a schedule to keep myself occupied by reading, writing, playing music, and maybe sometimes drawing. I’m also seeing things more clearly than I have in a long time. I sit outside in my yard and think about life and look clearly at the chaos that is happening around me. I want to make my experience useful for others on this blog, but I am still figuring this one out. I know others who are ill or disabled or face other challenges must struggle with living authentically. This is a strange ride indeed.

I have realized that I’ve been living a double life. Not an interesting or even sexy double life as a secret agent or a superhero. I’ve been living a very boring one. I’ve been pretending to be “well,” to be able to stand, drive, be accomplished and have a career, and then come home on the weekends and be bed-ridden, unable to do the basics like cook for myself or do laundry. My husband picked up the slack on everything else. 

I’ve been pretending to be one of them—living among the well who talk about traveling, doing yard work, or going places after work. Pretend to not be on an endless cycle of suffering and needing to go to the hospital. Pretend to not have just dragged myself off the floor of my office or the bathroom and then walked into a classroom to teach. 

But as I have been getting progressively worse this year, I have maxed out my credit card on pretending. My body will no longer let me pretend. I no longer have the will power to keep up the charade. 

This is a good thing because now I can try to live a more authentic life. I have been lying to everyone and to myself for a long time—lying about what I am really able to do and who I really am now. Maybe living authentically is easier for others with chronic illness, but I thought I was making illness look good. For whom?

I’ve never been much of a liar because I’m really bad at it. Bullshitting is not really my deal. But I can put on a stellar performance of being “well” that I start to wonder if theater was my calling.

I wanted people to think I could do it. I needed to believe I could do it. There’s too much at stake if I really can’t do it. I wanted to believe that if I pretended long enough that maybe the performance would become reality. Fake it until you make it, right? It didn’t work out for me. It only made me worse. My fairy godmother never came to give me some killer heels and turn this pumpkin into a new life.

But I can’t do it. The independent, ambitious woman I was a few years ago is now wholly dependent on others to get by. And that’s ok. I still use my polite words, “please” and “thank you.” I'm grateful for the friends and family who have shown their true colors and stood by me and for my husband, who is my hero.

So I’m going to try this authenticity thing. Reality is harsh. It means doing very little driving. It means not pushing myself so hard every day, which is second nature now. It means accepting that my options have narrowed and I may continue to get worse. I’m going to be honest with strangers, friends, family, myself about what I am able to do moment to moment. I am going to keep using the electric cart at stores no matter how many times I get dirty looks from the elderly. I'll use my wheelchair when I should. I'll use my shower chair with pride. I’m going to remind people that despite being young and having a rosy glow (that’s the makeup talking), I am not well.

It means that I no longer care so much what others think, and that is incredibly freeing. I can deal with the stares when I use my walker. I can now pluck up the courage to say “Pardon me, but I think I’m going to faint. Do you happen to have a fainting couch so I can make this look fabulous?” My illness is an unpredictable beast and I’m going to stop fighting it so hard. It means suffering in silence less and maybe becoming in tune with the world around me once again.The future is very uncertain but I'm getting more comfortable with that. I am gaining a lot of life XP in the process, and that is invaluable.

I don’t know what authenticity will look like, but I like the feel of it already. I am sick. I am unable to stand or walk for longer than a few seconds. I can’t breathe sometimes. I need to lie down. I am kind of broken. I am hard core. I’m a tough cookie. I am smart and educated. I am a warrior, fighting from a seated position with plenty of fluids, salt, and chocolate close by.

How do others live authentically despite adversity?

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.

Wednesday, September 3, 2014

Now What

This post wasn’t the plan. I'm working on other posts about navigating the medical system and testing, but I fell down the rabbit hole again...

Four. Four times I have had to take a leave of absence from work over the last three years. Last week I had to take another leave of absence from work, leave for the rest of the year. This is the longest leave I have ever had to take (not counting the year I didn’t work). A few years ago, I used to never call in sick to work. Despite working hard to keep up my energy and stamina this summer, I only made it through a week and a half this Fall semester before I started to hit The Point of No Return—the dreaded long period of being bed-ridden after having to push myself past my limits. 

The semester didn’t start well. My teaching schedule included 9 hour days with driving and teaching hours in a row without a break. Something has changed. This time last year, I had almost this exact same schedule. I struggled, but I could do it. The difference now is shocking to me. I decided to no longer stand or walk while teaching (something I should’ve been doing last year). So I would sit and try to teach, but it wasn’t enough. I could barely move and the disabling, new symptoms I have been experiencing this last year—losing my mobility, intense weakness, difficulty breathing, etc—were getting worse. Driving has gotten much more difficult and a little scary, which makes commuting complicated. 

I had been mentally preparing for having to take a leave of absence all summer. After the sheer brutality of last semester (including hitting The Point of No Return twice during it), I knew it was a definite possibility. I just didn’t expect to only make it a week and a half. 

My health has gone downhill this year, and I'm in disbelief with how much less I am able to do compared to just a year ago. But I am learning how to accept this and try to work around it. I feel incredibly guilty about having to go on leave but realistically I didn’t have any other choice. I’m thankful for how supportive my work has been and that I can have this time to focus on my health.

So now I am trying to speed along the endless appointments and tests I have been doing this year. I believe they are getting closer, and I am currently being tested for Myasthenia Gravis, but nothing is for sure. I am trying to rest. I made myself a schedule to work on other projects like writing, painting, music, cooking (while sitting of course), hobbies and passions I haven’t had any energy for the last few years. But I already miss work. I am a workaholic to the core. I told my husband I’d even take a stack of essays right now and he said, lovingly, “you have a problem.” Yea, probably.

I’m still fighting. I’m still pushing forward. Despite these struggles, I have a good life and I’m working on being well enough to enjoy it more. Adversity, ain't no thing. As Maya Angelou said, "Still, I rise."