You don't look sick?

There seems to be a unspoken understanding that Sunday is a day of renewal, where the chaos of the previous week is laid to rest. Sunday is an ode to the childhood mantra of "Do-Over". One feels a sense of relief that the previous week is over and eager anticipation towards the new. Whatever failed before is no longer a worry. A new day excitedly invites you to participate with joy! Even if it's raining, one can say that the rain is washing away the old to let in the new. A baptism of sorts. So let us climb aboard a new ship called "The Future" and sail uncharted waters into adventures you have never known. Yea, the seas may look familiar but you if you look at them with tales of where you have been, you will surely miss out on hidden treasures waiting to be discovered. Enjoy! Explore! Live with purpose.

My upcoming week involves having a surgical procedure done to cure a long standing issue. I have a condition known as Ulcerative Colitis. I have had this for about 20 years and aside from the occasional flare-up's, I have been able to maintain a "normal" lifestyle with medications. That is, until this year. It is so ironic that as you get older, things have a tendency to stop working. In April, I started having acute attacks that sapped most of my strength and led me to my pending surgery.

For those that are not aware, Ulcerative Colitis or "UC" is in the same family as Crohn's disease which is another type of Inflammatory Bowel Disease. Over the years of having UC, the challenge of the disease has been two-fold. The physical symptoms I suffer during a attack include frequent bowel movements, intestinal bleeding and extreme fatigue. But just trying to describe the physical symptoms belittles a true understanding of the hell those of us with UC or Crohn's are actually going through. A common phrase uttered either aloud or through the eyes of someone you are trying to describe your condition to is "You don't look sick?" Those of you that have this or another malady with no outwardly visible signs know exactly what I mean. You almost get the feeling that those you explain this to think you are making it up just to gain sympathy. In some ways, I wished at times I could tell people that I had cancer. Everybody knows what cancer is. You say you have cancer. They say "I understand" and the matter is done. You say you have UC. They look at you with a quizzical stare that continues even after you explain what UC is.

And the physical symptoms I described earlier don't give honesty to what is really taking place. To say "I go to the bathroom a lot" makes it sound like UC is just a inconvenience. Nothing could be further from the truth. Imagine having a 30-second window in order to even find a bathroom. Otherwise you can plan on taking a shower and putting your soiled clothes in the laundry. Now imagine this happening 20 - 25 times a day.  Now imagine each time you are bent over with cramping and convulsions that take you to the edge of passing out. Imagine the very food you eat to provide you sustenance is creating pain akin to giving birth or passing kidney stones. Again, 20-25 times a day. Oh, and you're bleeding too! You're anemic from the blood loss.

For myself, just when I didn't think it could get much worse, I started having severe incontinence issues. I could not hold, control or regulate when I would go. My body decided for itself. Not fun! The worse episode for me was my first day at a new job. I arrived in the parking lot only to soil myself in the car. No change of clothes. No way to clean myself up. In shame and embarrassment, I turned around and went back home. I didn't even bother to call the employer to explain because I assumed they would give me that same blank, quizzical stare when I tried to explain what UC is. Why bother? The problem was not going away. Medications were not helping. How could I even work if I have to run full speed to the bathroom every ten minutes?

Then there is the mental duress. Very much a double edged sword for the UC or Crohn's sufferer. Because an attack can be brought on by STRESS!!! Great. What do I have to worry about? How about almost EVERYTHING! Where is the nearest bathroom? I have to eat but eating will hurt me. You now become a prisoner in your own home. Solitary confinement. And if you have family with you, they are equally burdened by wanting to ease your pain and suffering but unable to do so. As is the case with any ailing family member.

I write this not to draw attention to myself. After all, I can think of much more enjoyable ways to do so and not mention my bowel movements (insert sarcasm font). I do this to help anyone that has UC or Crohn's or ANY non-famous illness that "You don't LOOK sick" when you are very sick. It's so hard having someone who can understand what you're going through other than another sufferer. Thankfully, you now have the web that offers a vast amount of education, support groups and blogs to find others on common ground. My advice. USE THEM! For myself, nothing worse than being a prisoner in your own psyche.  You are not alone in your suffering. Reach out for support from those that understand.

I have been fortunate, nay, extremely blessed to have a wonderful family to tolerate me as I learn to humble myself and accept that I cannot do or fix everything on my own. That is the strongest point I can impart onto you. Whatever trial you are facing, do not do it alone. We, as God's children, were never meant to be without family, without connection to one another. And God, I have discovered, will even allow illness if it brings about compassion, tenderness & closeness. As John Donne said, "No man is an island." 

So I approach my new week with a trust and faith that my ills will soon be relieved and I will be able to return to a normalcy that I have not had for a long time. I pray for good health for all of us. But I also pray for abundant love even when good health is absent.