Control Over the Uncontrollable

Oxymorons seem to be the norm when discussing chronic physical illness. For example, as discussed in earlier posts, some chronic illnesses are associated with forms of memory loss while at the same time can assist in creating what feels like undying traumatic memories. Other times, some people with certain chronic physical illnesses experience themselves as having had no control over the development of their illness,the course of the illness, or the prognosis; nevertheless, these same people manage to develop a strong sense of control over their lives. There are countless examples demonstrating how the psychological experience of living with a chronic illness is extremely complicated, far from black and white, and full of gray which on the surface seems contradictory but upon reflective examination makes perfect sense.

Lets examine the seemingly ironic control over the uncontrollable. How does a person who lives with chronic physical illness feel a sense of control when at the same time that person describes the development of his or her illness as completely out of his or her control? Quite commonly people who live with chronic physical illness, especially immediately following the receiving of a diagnosis, attempt to compensate for the lack of control over their illness by becoming overly controlling in other areas of their lives. For example, a parent may excessively worry about his or her children and may uneccesarily micromanage every aspect of his or her children's lives. Another person may stay at work longer, keeping all aspects of his or her job in order, and can become extremely anxious if something is out of place, needing to properly put it back in its right place in order to relax.

There are people who are diagnosed with chronic physical illnesses who up until their diagnosis have taken extreme care of their bodies and health. Sometimes these people will say things like, "I don't understand. I did everything right. I exercised and ate healthy." Or if a young person is diagnosed you may hear something like, "but this only happens to old people. And even if people who have been diagnosed did smoke or eat poorly, they may state things such as, "my father smoked for 50 years and he was fine." What all of these people share is the experience of having the feeling of being in control of their lives and of their health become suddenly shattered after receiving their diagnosis. Now how to regain some control? Ok anyone can default to overcompensating and being excessively controlling in other areas of his or her life, which is not necessarily a bad thing and can at times be comforting...but does it really make one feel more empowered? Not really. Fortunately, this is not the only manner in which one who lives with a chronic physical illness can experience control over the uncontrollable.

When first receiving a diagnosis some people may not want to talk about the illness. They may feel embarrassed by it, may not want to depress or bore others with it, may simply want to pretend it does not exist, among other things. This especially makes sense when first being diagnosed because one is in shock and at times in denial, and therefore pushes the realness of the illness away in order to cope. As time passes however, the illness becomes a reality simply by the virtue of its physical existence, symptoms, doctor's appointments, or taking medication. There is a huge experiential inconsistency if the person still cannot talk about the illness, as if there is something fundamentally wrong with him or her for having the illness. Now that gives a lot of power to the illness, doesn't it? Talk about feeling like you do not have any control.

Imagine what it would be like to take some of that power back! Would it be possible to verbally acknoweldge the existence of the illness to others, to describe it to loved ones in a way that communicates "this is part of my life right now and I am explaining it to you so that you can understand"? Ok so now you ackowledge that this is something that you have to live with. Now what can you do to live well? Can you research everything there is to know about what alleviates your symptoms and try them out? Can you interactively communicate with your doctor so that your doctor-patient experience is not just the doctor telling you what to do? Can you not be embarrassed that you have to live with your illness and express to others any accomodations that you might need? You are entitled to accomodations. You have control over all of these things and more. Yes you still cannot control the fact that you have an illness but that does not mean that you cannot control what you choose to do about it. If you experience the illness as playing a power game with you in which it has all the power, then play the game right back and win it by taking control over all the things that you can. Even though it seems like many things, the illness only took control of one thing, and even though it is a big thing do not forget that it is really one thing.

I do not intend to minimize the extent of change that occurs in a person's life after being diagnosed with an illness but I just want to point out how easy it is for our minds to play a trick on us and make us think that control is lost over everything...that is the illness's power game. Changes will occur in your life after being diagnosed with a chronic illness--YOU ARE IN CONTROL OF HOW YOU DEAL WITH THEM...ALL OF THEM (unless you are deemed as lacking capacity to make decisions in which case you probably would not be able to coherently be reading this). The illness is only in control of the fact that you have it. Do not give it any more power than that. You can have control over the uncontrollable!