This is a repost from a recent awareness campaign set up through HopeandAplles.com. I really enjoyed writing it, and I feel like the post has some long lasting value. For posterity's sake, I will let it have a home here.
Ankylosing Spondylitis is a drawn out and cowardly enemy. One who deceives us with limitations, and assaults us with its tedious and persistent attack. Make no mistake about it; our bodies are now in a perpetual state of civil war. We may not be able to win every battle, but with the right tools, we can give ourselves a fighting chance at life.
Know thyself, know thy enemy.
Diagnosis clears the path to enlightenment. In doctor’s offices, online, and in the libraries, we learn the basic mechanics of this disease. The vocabulary behind the problem is constructed, and terms like immunosuppression and NSAIDs take on a wholly new and relevant meaning.
It is not enough, however, to know the common vernacular behind the disease; to read the Wikipedia articles and several forums. No, we must get to know ourselves, and understand our actual limitations. We have to know, not fear, that certain actions in our life are going to leave us in pain. We have to prepare and accept the consequences of our activities, while also understanding their essential nature in our lives.
He who knows when he can fight and when he cannot, will be victorious.
When the disease is in full attack, and the inflammation throbs between our joints, our options can seem quite limited. We often recede from our families and friends. We seek a quiet and calm place to be alone in our pain, and rest our aching bodies. Over time, the habits we form in these dark places seep into the rest of our lives. The fear of another hurtful day keeps us from living on our own terms. We opt out of a movie with friends, or a night of dancing at a club. We stop ourselves from a day hike or even a trip to the store for some essentials.
It took me a while to realize this, but the fear wrought from the worst moments is unnecessary. We may wake up sore the next day, but we can do so with a smile on our face. We must learn to know, and accept, that regardless of what comes tomorrow, we may be in pain regardless of our choices the day before. We can’t hesitate to do what we love. To keep ourselves isolated, and to procure false limitations is one of the worst mistakes AS patients can make. Live well, accept the pain when it comes, and know that you are stronger than you can imagine; you can take it for the sake of really living.
There is a passage in the Hagakure, one of the essential books on bushido and the way of the samurai that says this: “There is something to be learned from a rainstorm. When meeting with a sudden shower, you try not to get wet and run quickly along the road. But doing such things as passing under the eaves of houses, you still get wet. When you are resolved from the beginning, you will not be perplexed, though you still get the same soaking. This understanding extends to everything.”
The key to living with AS is maintaining the proper perspective. Mental and physical struggles will persist, but when we understand and accept the nature of the disease, we begin to overcome it.
Strategy without tactics is the slowest route to victory.
Our rheumatologists and other doctors are our greatest allies in this lifelong battle. They provide the weapons, but we must supply the action. Their plans must be carried out with vigor and consistency; otherwise it’s just wasted time and money
As a young man who struggles with this disease every day, I can say that these tactics work. Keeping a realistic perspective helps me to find hope each day. I’ve taken the skills taught by my Doctor, and with the support of my friends and family, have seized the life I was content to lose. I’ve enabled myself through my online friends, who remind me that I am not alone. I’d like to thank all of you for letting me share this, and I hope that it might help others in their walk with AS.