perceived control

Teasing it all Apart...

So you're living with and receiving treatment for a chronic physical illness; seems pretty straightforward, BUT is it? You have unpleasant experiences, both physical and emotional. You think, "oh that is just the illness acting up." Is it? Maybe it is the medication that you take to treat the illness. Is it? Or do you wonder that maybe it is the depression you experience because you have to live with illness and receive treatment? Which one? All of them? Some sometimes and others other times? How do you tease it all apart?

People who live with chronic physical illness at times can have experiences that seemingly appear to be physical symptoms of the illness. For example, people can feel nauseous or have a rapid heart rate, which both can be the result of an underlying illness, but which can also be side effects of medication. Similarly, memory loss and cognitive confusion can have a neurological etiology or may be the result of the persistent use of certain types of medication. Sometimes very concrete physical reactions such as dizziness and increased blood pressure accompany particular emotional states, such as anxiety. Other times, experiences that appear to be clearly psychological, such as paranoia or hallucinations can actually be the result of a physical problem or a medication. How does one make sense of all this?

It already seems not quite fair that one has to endure life with a chronic physical illness. It is as if the illness was not enough and side of effects of treatments need to be thrown into the mix, as well as potentially any emotional reactions to living with the illness and/or the treatment side effects. Part of what brings many people who live with chronic illness some solace is the element of perceived control--the feeling that you can control aspects of your illness. Oftentimes perceived control can be experienced when a person can label what s/he is feeling in the moment and can feel confident in predicting how long it will last or what will happen next, as well as knowing what to do about the particular feeling. Unfortunately, this task can be extremely difficult when there are so many factors at play. "This time is my nausea the typical nausea I get from my illness or is it the new pill my doctor prescribed? I don't know and that makes me anxious...oh no I get nauseous when I am anxious too." Or what about this scenario: imagine how out of control a person who has no history of mental illness may feel if suddenly s/he hallucinates that s/he is upside down when in fact s/he is lying in bed. No this person is not necessarily psychotic.

It is easy to see how such scenarios can take away some of the sense of control people who live with chronic illness would like to have. However, this is not a hopeless predicament. Like with many situations that people living with chronic illness need to face, this too requires a lot of active coping and some creative thinking. This complicated web of experiences requires one to be a big advocate for him or herself so that one can begin to tease it all apart. For example, it is extremely important to learn about the possible side effects that the treatment you receive has, as well as learning about the symptoms of your particular illness. If your illness and the treatment have some overlap in terms of symptoms then it is extremely important to speak with your doctor about how one goes about differentiating which is which and what to do about it. Having some knowledge about all the things happening to your mind and body can help make it less frightening and more predictable, and in effect may let you feel a bit safer. Additionally, even if you are fairly certain that your discomfort stems directly from your illness and/or the treatment you are receiving, it can be extremely beneficial to speak with a psychologist or psychotherapist as many of your symptoms can contribute to a great amount of emotional stress, anxiety, and depression--all of which are normal reactions to living with a chronic condition. The feeling of loss of the little control that you believed that you had left can be frightening and unearthing as well. It can be very helpful to explore these fears in a safe and non-judgmental environment.

You do not have to tease it all apart alone. In fact you should not try to do it alone. Having a team of family, friends but also of doctors, and therapist can help you make sense of what you are experiencing and why. You cannot tease it apart all at once but piece by piece, moment by moment experience you can start to regain your footing on a sturdier ground. You will see it as a process rather than a one time deal--the process of teasing it apart.