The Hidden Enemy

Although many people may appear normal, millions of people suffer from diseases that are hidden.

By appearance, nothing looks wrong. On the inside, a war of epic proportion is being waged. Whether it is physical, emotional or mental.

I have heard people say all my life to one person or another that they’re just faking it, they are just lazy or nothing looks wrong with them.

Ankylosing Spondylitis (A.S.) is a life-altering, hellish disease. I know because I was first diagnosed with it about 20 years ago. Though I believe I have had it since I was a teen.

There is a blood test given, and if the HLA-B27 gene is present, you will be given the diagnosis and your life will never be the same.

There is a portion of the people afflicted with this horrible disease that the test does not show them to be positive for the gene.

More people have A.S. (0.1% to 1.8%) than have Rheumatoid Arthritis(.05%to1.0%), yet no one has ever heard of A.S.

There is no cure. There are certain medicines and diets that can help slow the progression of the disease and in some cases relieve symptom’s somewhat. The best are called biologics that target the immune system to suppress it. The black box warnings are pretty scary. You could possibly get cancer, TB and many infections. You have to be really careful who you are around, because anyone who is sick will pass it on to you, due to a weakened immune system. So, at times, the isolation would seem to others as if you are anti-social.

I have been on most available biologics since being diagnosed. Currently, I am on Cimzia. Because of a move and change in insurance, I was off my medicine for about nine months. Insurance companies do not like to approve these types of medicines because they are very expensive (close to $14,000 a year). I take this medicine every two weeks by giving myself an injection in my stomach. A small price to pay for all it does. I consider it a miracle drug even though it has some serious risks taking it.

The disease starts as a low, dull back ache with bouts of extreme fatigue. The immune system attacks the body - typically, the joints at first, later the organs and especially the eyes (called iritis.) When the disease flares up it attacks the joints, eating away at them until there is nothing left. Then brittle bone grows in its place, which creates a lot of fear of falling, which could be catastrophic. I am not supposed to lift more than 10 pounds, but often I do because people look at me and see a guy who is 6’4 and weighs 230 lbs. with a muscular build and naturally ask for help. My male ego does not let me say, “no, I’m sorry I cannot help you, because on the inside I have the body of a frail 90-yearold man and that lifting things over 10 pounds will cause me days of suffering,” So, I help and then suffer in silence.

During a flare, I only get four to five hours of sleep per night, which causes a lot of stress and emotional situations that normally would not be there as the sleepless nights progress.

The pain caused by A.S. is so intense at times that it causes nausea, vomiting, diarrhea and, in some instances, loss of consciousness.

We consider ourselves to be prisoners of our own bodies. Sometimes it is obvious there is something wrong. During a recent flare, I had a limp for about two months, and while my shoulder was being attacked I could only lay in one position at night to fall asleep. During the early stages and into the disease you would not be able to tell what is going on. Later, we begin to bow over due to the curvature of the spine that is slowly being fused.

As a man, I find it very embarrassing that I can no longer tie my own shoes or simply help a friend move.

My wife has to help me tie my shoes and at times help me back to the car while shopping because my hips and back lock up from pain.

At times the only reason I have not just ended my life is because God and my wife of 20 years. I feel she is locked in this prison with me because she did not sign up for all this. My wife is my rock and God continues to lift me up when I am at my lowest.

So, keep in mind that although you see someone who looks normal or maybe breaks engagements at the last minute numerous times, there could be something going on with them that is not seen by the eye.

There are many diseases out there like this one. There is so much more to this disease that I did not write about, but if you would like to learn more about this debilitating disease you can go to www.spondylitis.org.