Reality v. TV: The "House" Effect on Chronic Illness

About 14 years ago, a show premiered on FOX that absolutely fascinated me.  It was a combination of Sherlock Holmes novels and medical dramas like ER.  It was called House, and I was obsessed.  I loved tuning in week to week to watch new episodes and see what crazy observations the brilliant Dr. House would make to save the life of a new patient.  What can I say?  I'm a sucker for a good drama, and I love a mystery.  House was a great show!

However, about a year after it's premier, I began to struggle with my own mystery, and I learned the hard way that the real world of illness in the US looks NOTHING like the stories on the TV show House.

In every episode of House, the episode goes something like this:

patient has weird symptom/something bad happens, patient sees other doctors and they cannot figure out what is wrong, Dr. Cameron(the female member of Dr. House's team) reads the case file and manipulates Dr. House into taking on the case, the team evaluates the patient, the team admits the patient into the hospital, they misdiagnose 3 or 4 times, then Dr. House sees the patient and notices a symptom that everyone else misses, and finally he cures the patient!

In my reality, when my body started to unravel 30-50 symptoms ago, it was not a quick hospital admission where someone figured out everything that was wrong with me.  It was a 13 year process of countless doctors, many ER visits, thousands of appointments, an eventual hospitalizations, many guesses of diagnosis, and then another year of appointments to get the diagnoses.

Once the diagnoses started, it wasn't one diagnosis and one medication or one surgery that magically cured everything. It was countless appointments, many more days in doctors offices, and a lot of trail and error of medication to get some control.  The word cure has actually never come out of any of my doctor's mouths.  It has never been an option.

A friend of mine in an online support group for one of my disabilities posted a description of going to the doctors office as an individual with multiple chronic illnesses, and it was an amazing description that I wanted to share with you:

I felt this way during my hospitalization at Presence St. Joseph's Hospital in Chicago.  I was admitted to the Diamond Headache Unit due to a severe chronic intractable migraine.  As mentioned in a previous blog, I left Presence St. Joseph's Hospital with 2 additional diagnoses: POTS and Ehler's Danlos Syndrome.

When the team of doctors met with me, there were many questions asked that I didn't fully understand:

Do you only faint when you had a migraine?  Do you ever feel your heart beat change?  Are you tired at the wrong time of day?  How often do you fall?  Is it only associate with your migraines?  You've sprained your ankle how many times? Do you have any other joints that sprain or dislocate regularly?

Like the description above, the answer to these questions was "yes", but it wasn't why I was there.

I wasn't worried about the fact that in 3 years of marching band I had sprained my ankle 8 times.  It did not worry me that as a kid I could pop my shoulder in and out of socket like it was a party trick.  None of my doctors had ever bat an eye about me tearing ligaments in my hands and feet on a regular basis.  Honestly, alarm bells did not even go off when I would faint because it would be written off as a part of my migraines or exhaustion, etc.  I believe that the lack of concern so many providers showed, or worse being written off or told I was dramatic lead me to a place where I believed that these experiences were acceptable deviations from the norm and were not worth addressing.  I see now that this is not the case.

I was inpatient at the Diamond Headache Unit seeking treatment for the migraine that had been stealing life from me for the past 742 days.  I wanted to have some days free of head pain or even overall lower head pain levels in day-to-day life.  I wanted to get the opportunity to be me again.  However, I learned that caring for one part of my body, while neglecting the other issues, would never result in true healing.

I'm grateful that because of the great care I received under the team of physicians and that I did have some pain free time after my treatment at Diamond Headache Unit!  Looking back on my experience, I'm also grateful that despite my lack of concern about my fainting and stretchyness, that the incredible group of physicians at the Diamond Headache Unit persevered to find answers for me to help me to get treatment for overall healing instead of just focusing on my migraine disease.  When these physicians brought up EDS, gave me a clinical diagnosis, and helped me to pursue a formal diagnosis, it was like the puzzle piece that makes the entire picture make sense had been clicked into place.  Today I am able to recognize that their expertise helped me gain: a deeper understanding of my overall health, access to the care and accommodations I need for my success, and reduce my head pain.

I have built up a team of providers who have worked or are working with me to help care for my body's systems.  My care begins with my amazing primary care provider.  He supports me in my pursuit of accurate diagnoses and effective management of my chronic illnesses while also treating acute illnesses and monitoring my health through my annual physical.  I have continued seeing a headache specialist to treat my migraine disease.  I worked with an incredible geneticist to analyze my genome, diagnose and understand current genetic abnormalities, and obtain a clinical diagnosis of Hypermobile Ehlers Danlos Syndrome.  I have a great orthopedist who helps to care for acute joint injuries and monitor my joint health as my EDS progresses.  I have a incredible neurologist to help manage my hyperadrenergic and low blood volume POTS, as well as diagnosing my neuropathy.  From these providers, I continued to build my team to encompass more of my body's needs.  I have established care with a wonderful electrocardiologist to manage and monitor my arrhythmias and heart health.  I worked with a wonderful gastroenterologist who helped me to obtain my gastroparesis diagnosis and treat my gastroparesis.  I have an allergist who diagnoses and treats my food, chemical and drug allergies, and helps me to navigate seasonal allergies.  I have a kind hematologist who treats my Von Willabrands disease.  I have a endocrinologist who is treating my hormonal imbalances.  I worked a neurosurgeon who diagnosed and attempted treatment of my CSF leaks, and is monitoring my acquired chiari.  I am actively seeking a neuroradiologist or anesthesiologist to treat my CSF leaks.  I have an amazing pain management doctor who helps me to keep myself together and preserve my mental health by treating the pain that comes along with the plethora of conditions that stem from EDS.  Finally, I embrace holistic care for my body and spirit through utilizing massage therapy, counseling, and acupuncture as I am able.

I strongly encourage you warriors, despite the fear of people dismissing your pain and the overwhelming numbers of appointments, persevere.  Healing comes when we strive for understanding of our body as a whole, and to work towards a holistic reduction of pain.

Sending wishes for us to find strength and healing together!

-Katie Pearson Mahaffey-