Documenting the Coming Singularity

Saturday, December 09, 2006

How to Live with Chronic Illness

First, I'll give you the same message you hear whenever you call any doctor's office these days: If this is a medical emergency, please hang up and dial 911. Next, a disclaimer: I'm not a doctor or any other type of healthcare professional. I don't know squat about medicine, except what the medical community wants me to know. That said, I'll break the ice here by telling you that I am one of the rare males of the human species who has Chronic Fatigue Syndrome. (If you're one too, you know what I mean.) For some reason, women are more likely to be sufferers of CFS or Fibromyalgia than are men. It's a medical mystery. However, male or female, one of the aspects of CFS that makes it so emotionally difficult to deal with is the fact that there is no definitive test to prove that someone has CFS; this means that lots of people think that you're either faking it or it's "all in your head."

I'm certainly not saying that CFS is the worst thing in the world. Heaven knows there are lots of more-challenging illnesses. Nevertheless, I share this with you because I have had to learn a few things over the years about how to live with a chronic illness. If you are in the same boat, you might benefit from this article. What follows are some of the lessons I've learned.

Keep a Balance of Hope and Acceptance: This is one of the most difficult balancing acts in the world to accomplish. On the one hand you should never lose hope that you could get better. Anything is possible and, depending on the illness, some outcomes are more positive than others. On the other hand, as long as you are sick, there's no use being constantly in the dumps or angry about it. So there's a fighting spirit and attitude to maintain, as well as a kind of Zen-like peace to cultivate. But wait, there's another balancing act to keep in mind...

Keep Looking for a Cure, but Beware of Snake Oil: There's no question that the healthcare industry is out to make money, and neither should there be any doubt that there's also a lot of snake oil being sold. With some illnesses, there's no real doubt that the therapies available through mainstream medicine are legitimate. With others, there is no cure available from the medical community, and in these cases, the snake oil does flow. In my efforts to find a cure for my CFS, I've had every blood test known to man, CAT scans, X-rays, sinus surgeries, allergy testing, etcetera. On the alternative side, I've tried homeopathy, acupuncture, vitamins and supplements of various shapes and consistencies, and get this: I once travelled to Santo Domingo to see a doctor who had supposedly cured a friend of a friend of a friend. I've also been to New York, Atlanta, and the Cleveland Clinic in Ft. Lauderdale. I've spent lots of dough, some my own and some belonging to the insurance company. There have been a lot of well-intentioned people who felt the need to tell me about someone, somewhere, who knows someone else, who had a relative who got cured by drinking something from Hawaii. It only costs $100 per bottle, and you have to drink it regularly for a year before you see any improvement. So you have to be looking, but also careful.

Simplify Your Life if you Can: Many chronic illnesses, if not all of them, are exacerbated by stress. Things that cause you anxiety are not good for you. Of course everyone has to deal with some stress, it's part of being alive. But some stress is unnecessary and should be jettisoned as quickly and efficiently as possible, just like on a ship foundering is stormy weather. You can picture those sailors dumping cargo in an effort to make their ship sail higher in the water and avoid going under. A dramatic analogy, but apropos for some of us I think.

For me, a leadership role in my church was causing a lot of anxiety. My fatigue forced me to have to miss many meetings and activities, especially at night. I would completely run out of energy by the afternoons and had nothing left in me after that (and that was on good days). I knew that people were depending on me, some were telling me to "push through." I was made, by some, to feel guilty about missing a meeting, and admittedly by my own mistaken sense of duty. Every time one of those meetings would loom on the horizon, I would go through an agonizing period of decision-making: Should I go? Should I stay home? How bad do I feel? Is this meeting too important to miss? And on and on I would go. Eventually I decided that this wasn't helping me at all. So I resigned from my leadership position. One unexpected benefit I enjoyed, besides the less stressful life I had brought myself, was the new and very different perspective I gained as an ordinary member, rather than a looked-up-to leader.

Along these lines is a related lesson that is very hard for some of us to learn-How to say "No": Or maybe "I'm so sorry, but I can't." It doesn't have to be defensive in tone, but it must be heard. Even healthy people need to get this. We complain often about how little time we have and how overwhelmed we feel by our ridiculous schedule, and how we wish things could be different. As someone wise once asked: Who put a gun to your head? We have the power to change things. We have the authority to say no, when necessary for our health and our relationships. Will there be some price to pay for saying no? Sometimes. But that doesn't change the fact that our schedules are up to us.

Cultivate Relationships that Sustain; Trim Those that Injure: I remember reading many years ago this advice: Politely part ways with anyone who doesn't believe you are really sick. If you have one of those mystery diseases like I do, you will know what I mean. Some people in our lives can actually make us sicker. Not referring here to people putting arsenic in your food. I'm speaking or those who put such stress on you that your chances of getting better are lessened. On the other hand, there are people in this world who are able to bring light and joy to others. If you know one of these, cherish them. If you can find one, or more, lucky you, you will be blessed.

I want to touch on, at this point, a curious phenomenon I've noticed that has to do with our relationships. If you know the Bible much, you've probably heard of Job. He lost his family and got very sick. Some of his friends came to see him and eventually got around to telling him that his sickness was due to some moral failure on his part. People may not couch it in those terms, but there's a part of us that wants to find the reason why people suffer, so that we can feel that we are safe from the same fate. People like this (and we probably all have this tendency) can very subtly try to place the blame for your illness on some failure of yours. Sometimes our behavior really is to blame; smoking can cause cancer, fast food can cause heart disease, etc. But in many cases this is not so, yet people still want to ascribe blame. It goes without saying (so why am I saying it?) that this does not a sustaining relationship make.

There are many, many people out there, whether we can have a personal relationship with them or not, whose lives can provide us with the cooling breeze of encouragement and love. If possible, surround yourself with these kinds of people.

I certainly hope that some of what I have shared is encouraging and helpful to you. Please email me if you have an encouraging story to tell and I'll try to post it on this site.