Getting the Best Care - November 30, 2013

For me, one of the more surprising aspects of dealing with major illness is coping with the expectations other people in your life may have about the medical condition.  People usually have a certain set of expectations about how they think someone will look and behave while they are dealing with a particular medical condition.   When they learn someone has cancer they may expect the patient to be bald, weak and thin. They may expect a patient recovering from surgery to bedridden.  They may expect   someone with lupus or Crohn's disease or other chronic illness to "look sick" in a particular way. If patients appear to be normal looking they may actually be surprised and even upset by it. Conversely, people are sometimes shocked when they see the patient look different than normal. Sometimes people react with looks of horror or dismay when they first notice the patient has a drastic weight change or other noticeable physical change. The unfulfilled expectation and resulting comments or reactions is a common issue that patients and caretakers must manage.

When you find yourself in this particular situation it is important to remember first and foremost that as the patient or caretaker you don't owe anyone an explanation or justification for appearances.  If people are upset or uncomfortable because of the patient's appearance or condition it is not your responsibility to make them feel better about it.  Your only responsibility as a patient is managing your well being and the only responsibility of the care taker is supporting the patient.   However you may find it helpful to have a few strategies for dealing with these situations.

One of the most helpful strategies is to let people know what to expect prior to seeing the patient.  When the patient has a scheduled visitor it can be helpful to send an email to the visitor and let them know about the patient's condition.   The visitor can also be told about changes in appearance, the patient's general mood and disposition as well as conversation topics to avoid and questions that the patient does not like to answer.  It may seem a bit strange to tell people how to behave but in my experience people almost always appreciate this information. No one wants to say the wrong thing when visiting a friend who is sick.  Preparing the visitor often makes the visit more pleasant for everyone involved.

Sometimes preparing the visitor isn't possible or is ineffective. People will sometimes have emotional reactions in spite of your and their best efforts.  It can be helpful to have a plan for when this happens.  Soon after my husband was diagnosed with cancer we ran into a friend in public. This friend burst into tears when seeing him. Afterwards he and I talked about how we would handle situations where well meaning people had emotional reactions. He preferred to use humor to defuse the situation and didn't want me to say anything. However I have some clients who have asked me to intervene when their friends or family members have emotional reactions.  Talking about these things upfront and having a general plan for coping can make the situation more comfortable for everyone.

It can also be helpful to simply acknowledge the situation is awkward when it happens.  When something makes us uncomfortable we tend to pretend like it isn't happening. This just makes it worse.   Frankly, it is kind of weird when the people in your life are weird about your medical condition. Simply acknowledging what is happening and expressing your discomfort with it can turn the situation around very quickly.  You may find it useful to prepare a few simple lines the patient or caregiver can say to gently let people know they are making you feel uneasy.  Using humor and a light hearted tone can be helpful too. However there is also nothing wrong with being blunt and direct if that is what is most comfortable for the patient.  It depends on the circumstances and most importantly what will make the patient feel best.

Dealing with an illness presents so many challenges.  This particular aspect of coping with others' expectations really surprised and often upset me in the beginning. After I developed my own strategies for handling these situations it became much easier. So I recommend talking about it before it happens and trying out strategies for coping with it. There is no right or wrong way to cope with these situations. It's all about finding something that works for your situation and comfort.