That Dreaded Moment
If you have been living with a chronic physical condition then you are likely to have been in a position of having to explain why you cannot do something that to most people is seemingly effortless. This experience is that of the "dreaded moment;" the moment when you have to remind someone of your diagnosis and of the symptoms that go along with it, those of which may prevent you at times from engaging in certain activities. This moment is often motivated by a deep feeling of shame and at times despair. Oftentimes this "dreaded moment" is so dreaded that it feels easier to lie about why you cannot do something than to actually explain to others the real reason. Other times, you may even find a way to put the responsibility on other people and create some rationale about why it may be easier or more favorable for the others to postpone whatever it is that is supposed to be done. Both of these options may even feel too exposing for some, and at times people living with illness may do things that really is not in the best interest of their health, just to avoid that "dreaded moment." Any of these manners of avoiding the "dreaded moment" seem crafty and harmless; however, in reality, in the long run they can cause a lot of harm to both the relationship one has with him/herself, as well as to one's relationships with others.
It can be helpful to think about concrete scenarios. For example, imagine a person who lives with a chronic illness who cannot predict how s/he will feel on a given day. This person may want to live as if the illness does not influence his/her decisions or social plans and may therefore not share with others in his/her life that scheduled plans cannot always be carried out. This person will make social plans but then if feeling unwell on the day of the plans will try to avoid the "dreaded moment" by saying something like, "are you sure you don't want to reschedule? The weather is not great and it may be hard for you to commute out." Or the person may make up an excuse that s/he perceives to be an acceptable reason for canceling such as, "I totally forgot but I promised my grandmother I would take her to her dentist today." These excuses, lies, and skirting of responsibility appear so harmless on the surface but over time will take a toll on one's relationships. A person's friends, coworkers, or family do not have to be geniuses to eventually notice a pattern of shirking responsibility or avoidance. The people in the person's life may begin to feel like the person is unreliable or no longer interested in a relationship, or they may get suspicious about what the person is hiding and feel insulted that something is being hidden. This can be a way that one may lose friends and in effect a social support network.
Even more harmful is the damage that such avoidance of the "dreaded moment" does to one's sense of self. The "dreaded moment" itself may feel embarrassing or shameful, as can the living with illness. It is not easy to live with illness and have to adjust one's life in ways that most people do not. However, avoiding discussions about how one's illness impacts his/her life perpetuates the idea of illness as a taboo and shameful experience. Such an understanding of illness comes from a position of ignorance and lack of education. By avoiding the "dreaded moment" one misses an opportunity to educate others on what the experience of living with chronic illness entails, in effect allowing the perception of illness as something shameful to persist. The person avoiding this "dreaded moment" keeps him/her self in an experience of shame, rather than moving into a position of empowerment, where s/he is entitled to voice his/her special needs, concerns, limitations, and experiences. Further, on a more concrete level, when a person living with illness engages in an activity that s/he is not really up for, rather than sharing that s/he cannot, this person's health can suffer greatly.
The irony is that many people who live with chronic illness may feel that confronting the "dreaded moment" will negatively impact their relationships. However, overall this is not the case. In fact, letting important people in one's life understand what the person living with the illness is going through can help these loved one's feel good that they can now know how to be helpful to their loved one living with the illness, can help reduce miscommunication and conflict over the things previously not understood, and can help the person living with the illness feel more supported.
Unfortunately, there are times when a person living with illness boldly confronts the "dreaded moment" to be met with disappointment. There will always be some people who may not understand the special needs of people living with chronic conditions. This can be a very painful experience but it can also be an experience where real supports are distinguished from superficial ones. Sometimes this painful process may require you to seek out the help of a professional such as a therapist or counselor. Asking for help in any form that is needed at a given time is one big step towards gaining some comfort when encountering those "dreaded moments."
It can be helpful to think about concrete scenarios. For example, imagine a person who lives with a chronic illness who cannot predict how s/he will feel on a given day. This person may want to live as if the illness does not influence his/her decisions or social plans and may therefore not share with others in his/her life that scheduled plans cannot always be carried out. This person will make social plans but then if feeling unwell on the day of the plans will try to avoid the "dreaded moment" by saying something like, "are you sure you don't want to reschedule? The weather is not great and it may be hard for you to commute out." Or the person may make up an excuse that s/he perceives to be an acceptable reason for canceling such as, "I totally forgot but I promised my grandmother I would take her to her dentist today." These excuses, lies, and skirting of responsibility appear so harmless on the surface but over time will take a toll on one's relationships. A person's friends, coworkers, or family do not have to be geniuses to eventually notice a pattern of shirking responsibility or avoidance. The people in the person's life may begin to feel like the person is unreliable or no longer interested in a relationship, or they may get suspicious about what the person is hiding and feel insulted that something is being hidden. This can be a way that one may lose friends and in effect a social support network.
Even more harmful is the damage that such avoidance of the "dreaded moment" does to one's sense of self. The "dreaded moment" itself may feel embarrassing or shameful, as can the living with illness. It is not easy to live with illness and have to adjust one's life in ways that most people do not. However, avoiding discussions about how one's illness impacts his/her life perpetuates the idea of illness as a taboo and shameful experience. Such an understanding of illness comes from a position of ignorance and lack of education. By avoiding the "dreaded moment" one misses an opportunity to educate others on what the experience of living with chronic illness entails, in effect allowing the perception of illness as something shameful to persist. The person avoiding this "dreaded moment" keeps him/her self in an experience of shame, rather than moving into a position of empowerment, where s/he is entitled to voice his/her special needs, concerns, limitations, and experiences. Further, on a more concrete level, when a person living with illness engages in an activity that s/he is not really up for, rather than sharing that s/he cannot, this person's health can suffer greatly.
The irony is that many people who live with chronic illness may feel that confronting the "dreaded moment" will negatively impact their relationships. However, overall this is not the case. In fact, letting important people in one's life understand what the person living with the illness is going through can help these loved one's feel good that they can now know how to be helpful to their loved one living with the illness, can help reduce miscommunication and conflict over the things previously not understood, and can help the person living with the illness feel more supported.
Unfortunately, there are times when a person living with illness boldly confronts the "dreaded moment" to be met with disappointment. There will always be some people who may not understand the special needs of people living with chronic conditions. This can be a very painful experience but it can also be an experience where real supports are distinguished from superficial ones. Sometimes this painful process may require you to seek out the help of a professional such as a therapist or counselor. Asking for help in any form that is needed at a given time is one big step towards gaining some comfort when encountering those "dreaded moments."