Alone...Actually You're Not!

Millions of people suffer from undiagnosed chronic medical conditions. Living with any chronic physical illness is likely to be challenging; however, there is something especially frightening when experiencing numerous painful symptoms on a daily basis without any understanding as to why they occur. Oftentimes, people who live with undiagnosed medical conditions have to undergo countless invasive tests and procedures only to be told that there are still no answers, have to take multiple prescription drugs with minimal benefit and oftentimes unpleasant side effects, and have to withstand being dismissed by both the medical and lay population simply because their illness does not have a name. People having this experience can feel very alone.  It can be extremely lonely to have an experience on a daily basis that nobody else in one's life seems to undertstand or know anything about. However, there are millions of people who feel this way. They may not always know each other, which makes it feel like they are alone, but there are other people out there with just the same experience.

Autoimmune diseases are typically the culprit underneath these unamed illnesses as they can present in a number of different ways and are extremely tricky to diagnose. It can take years, even decades before a proper diagnosis is made and subsequent treatment is offered. For example, WABC-TV writer and producer, Nika C. Beamon suffered from an undiagnosed chronic medical condition throughout her 20's and 30's before finally being diagnosed with a rare autoimmune disease called 1gG4 related systematic disease. She used her experience to spread some awareness about how great of a problem undiagnosed medical illness is in the United States and how much it affects peoples' lives both financially and emotionally. In her memoir "Misdiagnosed: The Search for Dr. House" she details her journey over the last two decades of her life as she tried to get an accurate diagnosis and appropriate help, and provides tips for how to cope while going through this journey. Below is an excerpt from her book.


"Everyone says I should be glad, happy, relieved—pick your own adjective—to finally know what’s wrong with me.  F*** that. I spent the better part of my twenties and all of my thirties, which should’ve been my carefree years, worrying and trying to find a real life “Dr. House” to help me. Instead of hanging out at clubs, I was laying on my back in hospital rooms and on exam tables hoping someone who tell me I wasn’t some sort of “freak of nature”.  Rather than meeting men or dating around, I drove countless smiles to meet a slew of strange doctors. But, what else was I going to do? How far would you go to find someone to help end your suffering?  For me, I would’ve done anything to locate anyone with the answer that would cure me.

I had to endure a colonoscopy, 5 endoscopies, 2 surgical biopsies, a spinal tap, a transesophaegeal echocardiogram, countless blood and urine tests, and enough radiation that I probably glow in the dark. But, I had no choice, or at least that’s what I was told at the time, if I wanted to figure out what was going on inside me that was making me so ill.

 I got the MRI’s, CAT scans, and any other kind of exam, procedure or test they ordered because doctors know what’s best, right? I visited doctors with names no 40 year old should know: hematologist endocrinologist, dermatologist, cardiologist, rheumatologist, immunologist, neurologist, radiologist and an infectious disease specialist.  And, as the list of specialists grew, my list of medications increased, as well. Unfortunately, most of the drugs I was on had no street value so I couldn’t even sell them to make back the fortune in hard earned cash I shelled out for them.  To cover the cost, I skipped vacations, new clothes or furniture, dinners out and even holiday presents.  Just trying to keep track of the refills or which doctor prescribed what drugs required an excel spreadsheet. Yet, I did it for the better part of two decades as I battled a host of diseases, none of which I’m sure I ever really had: mononucleosis, chronic fatigue syndrome, GERD, erosive esophagitis, Barrett's esophagus, PCOS, acanthosis nigricans, insulin resistance syndrome, NAFLD, transient ischemic attacks, Sarcoidosis, lymphoma, etc…

My years of being half dead didn’t only affect me -- nearly everyone else in my world suffered with each misdiagnosis; the least vocal were my parents.  They rushed to hospitals in three states taking solace only in the change of scenery. Innumerable times, they changed my clothes, drove me around, made my meals and listened to me bitch about one doctor, procedure or medical bill. On the days I was too weak to complain, they finally had the time to wonder if their oldest child and only daughter would outlive them, have a family of her own, or be able to just live on her own indefinitely. 

The men in my life were always forced to balance in a precarious position; caring for and about me but wanting the normalcy that every couple should have.  I, like I’m sure they did from time-to-time, questioned why they, healthy, attractive, single men in their twenties or thirties would want to be shackled to a girlfriend puking or passing out all the time, not due to alcohol. I’m certain staying nearly every Friday and Saturday night so we could be in bed by 9, unless it’s to have sex repeatedly, was not their idea of a good time. Yet, I was fortunate enough to be loved not just by one man but by a few as I tried to figure out if I’d ever have a relationship in which marriage and kids could be a consideration. Perhaps my inability to pressure any of them for happily ever after was the one unique sense of relief I provided to them.

When it comes to my friends, I am aware that the ones left standing after years of get well cards, calls, and visits, are the ones who truly didn’t tire of asking the same questions so many time; they’d have been better off recording them and playing them back rather than exerting the energy to utter them. The most common ones:   What did the doctor say? How did your test go? How do you feel? Is there anything I can do? The whole time, I have no doubt they were quietly hoping I’d give a terse response that amounted to me not needing their help or time.

By far the people I’ve spent the most time with, my co-workers, had to endure the least uneasiness because of my anomaly. Our jobs in television news, exposes us to varying degrees of human suffering daily so mine barely even made anyone break stride, miss their story slot or even lighten the work load.  In fact, my bouts with illness didn’t even make an internal email chain but when several of our reporters battled Cancer that was considered news. Hell, they even taped their treatments and recovery to boost ratings, although their stories were always billed as an opportunity to simply educate the public.

Now this is not to say that everyone I work with is cold or callous. They have all expressed their concern over the years. Sure, if I was visibly weak, they’d get me a glass of water or aid in getting me to the elevator. It’s just that work was the only place where I truly felt “normal” consistently. It was the only place where the way I was didn’t overwhelm anyone’s ability to see my intellect, and to push me to forge forward through every assignment, show or day. 

Just about the only people who have gotten off scot free were my extended relatives; the people who are only closer to you than a stranger because they share a blood line. I’d gather some of them would beg to differ with me because they sent a random message on Facebook or through email to ask about my well-being.  The truth is though the questions were usually to fill family gossip with a new nugget instead of truly to ascertain what, if anything, they could do to help me. I’ve been fortunate enough not to have ever truly needed any of their help.

I now know I have an autoimmune disease, which means a lifetime of chronic illness; this includes more doctors visits, pills and scans.  But, thanks to the news I’ve received, I won’t need anyone’s assistance or at least not the way I did before. I guess, that would be one plus. Another is that while I am a “freak of nature” because I have a condition few others share (IgG4 related systemic disease); I am not alone, struggling to find an answer anymore."
Nika Beamon definitely does not hold back. She speaks from her experience-- the experience of millions of others who just wish someone could tell them what is causing their physical suffering. One of the most important ways to cope with living with chronic physical illness is to find a supportive community-- to find ways of not being alone. Sometimes people join support groups, organizations, fundraising teams, or read lots of books by people going through similar situations. Maybe "Misdiagnosed: The Search for Dr. House" or other books like it can be helpful to you too. It is so easy and so completely understandable to feel alone, but actually YOU'RE NOT!