Almost anyone diagnosed with an autoimmune condition can tell you the road to diagnosis can be very long and difficult. We're talking YEARS. It's really quite mind boggling to those who don't know much about the process or medicine in general, that in this day and time of technology and medical advancements there is no one specific test for a lot of diseases out there. Even some of the diseases that do have specific tests can quite often test negative when in fact, the person truly suffers from the disease. Very often diagnosis is based on a checklist of symptoms over time, in addition to various diagnostic testing, over a period of several years. If you think its frustrating being the loved one of an ill person who suffers a disease that has yet to be named, try being the sick person.
This is the holding pattern I'm involved in as we speak. It's been five years since the first time Behcet's was suggested as a diagnosis. I've been misdiagnosed with two other diseases in the mean time (which apparently could still be an additional diagnosis), and its been just two months since my rheumatologist finally said he believes I have Behcet's disease, but he won't officially diagnose just yet. (For the record, both said rheumatologist and my internist told me it couldn't be Behcet's because I was "too white", and "your heritage doesn't support that diagnosis") It's been nearly my whole life I've been sick. I've been waiting on this diagnosis and its subsequent treatment for nearly as long. Finally, I have a diagnosis of sorts, and the beginning of a treatment plan.
The problem with having an invisible illness (which I'm learning most autoimmune diseases are), is that most of the time no one can tell by looking at you that inside, your body is waging a war on itself. That you are doing everything you can to smile while you FEEL that war happening inside. That you're smiling when you feel like you might be dying. They call them invisible illnesses because even though you could very well be next door to death, to anyone judging your health based on your physical appearance, you look normal, like anyone else. Not sickly. So, it goes without saying, that another problem we face is all the people in our lives who don't believe we are sick. I've had plenty of those in my time, and not all are just everyday people in your life. Doctors and other healthcare professionals too can be very judgemental. You know, because spending the day/night (sometimes both) in the ER, laying on the incredibly uncomfortable gurney in a drafty gown with your "sick" underwear peeking out, in the not so private (or quiet) too bright curtained cubicle, next to the serial projectile vomiter is my idea of a good time. They also throw in those party favors like catheters, nasogastric tube to vacuum air out of my gut, IV's (which incidentally never get started on the first shot with me. My record is 14 attempts before a successful IV was started on the top of my foot), monitors, and every form of irradiating test known to man. Now that's what I call fun, no wonder we "fake it"! Or the countless Doctor appointments you actually have to get dressed for (at least that's what they expect) which, because the Doctor has no idea what is really happening, usually results in a script for antibiotics and/or an anti inflammatory just as a consolation for actually dressing and getting out the door for said appointment. Or the frantic Doctors appointments you make when you really feel a flare starting, getting an appointment for the next day, and having to cancel BECAUSE YOU ARE TOO SICK TO GO TO THE DOCTOR. It happens, its true. I really do understand that it's hard for those people to really believe there is something wrong with you when all you have to offer after those hospital admissions, ER visits, and countless Doctors appointments is a firm idea of what is NOT wrong with you, and a few vague "maybe's". But whatever happened to simply relying on a persons word? Lucky for me, I have the support of the people in my life who really matter. That's what counts.
So, now the short story when asked "What's wrong with you?!", is Behcet's disease. A rare form of autoimmune vasculitis (5.2/100,000 people in the U.S. are effected). Curious? Well, you could Google it, but there's something else I've learned out of all this. Get ready, brace yourselves because this is a biggie......not everything you read on the internet is true!! And, if you do happen to find a reputable source of information (NOT Wikipedia or, as much as I love him, Dr. House), I can tell you right now that due to it's rarity, the descriptions you do find on BD (Behcet's Disease), are nowhere near as horrific as actually living with this ugly disease. There are so many symptoms we suffer that never make it into the disease description just because there are so many different symptoms and not all BD patients suffer the same. But you can get a loose idea. One of the sayings in vasculitis the community
is "Anywhere blood flows the disease can go". As for the name of my blog, I am very lucky **insert sarcasm here** to have the GI involvement sometimes seen in BD. So for me truly, "Behchet's Is The Shits".
