Passing...and Meaning Making

The term "passing" has historically been used to describe the situation of when a person of a particular group can "pass" as a person of a different group. For example, there has been literature discussing the experiences of light skinned black people "passing" as white. "Passing" has also been identified in the context of the Holocaust, and how some Jewish people could "pass" as non-Jews. There are multiple environments in which the concept of "passing" is present, including in the world of chronic illness. Although experiences of race, religion, and illness can be significantly different, they can all bring with them a battle with stigma, discrimination, and at times alienation.

"Passing" may be a more relevant construct for people living with invisible illnesses; however, it can be an issue to grapple with for all people who live with chronic illness, as illness can be more visible during some times and less during others. If a person who is living with illness is "passing," that would mean that to others, that person appears as seemingly "healthy." As such, others would treat the person with the illness like anybody without illness and would not be aware of any adjustments or accommodations that the person with the illness may need. This can be a complicated situation that may bring up many conflicting emotions for the person living with the illness. For example, the person living with the illness may feel glad to be treated like everybody else, rather than having to explain to others what his/her particular illness is and what that means for him/her. This person may feel a sense of relief that the illness has not entered this particular part of his/her life, which may bring an experience of "normalcy," which is something the person may not often experience when having to cope with chronic illness (e.g. taking medications, having procedures done, being pricked with needles, etc.). These positive feelings of experiencing oneself like "everybody else" may discourage the person living with the illness to share with others any needed accommodations or adjustments. This can be especially true for teenagers and young people who live with illness. Imagine a 19 year old who wishes to go to an evening party with his/her friends but who is aware that s/he will feel very sick the next morning if s/he has not received enough sleep, or if s/he drinks alcohol while taking medication, or if s/he needs to use an inhaler in the evening and avoids doing so in front of others. This person may just wish to feel like all the other teenagers in his/her group who likely do not have to deal with such medical issues. It can be a challenge to realize that one can live with chronic illness and still be experienced as normal and even healthy in many other ways.

In addition to some positive feelings when "passing," a person living with a chronic condition may also feel anxious about having to eventually state his or her needs, angry that people assume that certain activities are easy for everyone to partake in, and perhaps scared that others will judge them for having an illness. Many people do not want to feel like the "difficult" one in the group who needs special care or attention to needs that the others in the group do not need. Many people do not want to stand out in this way. Sometimes people who "pass" may slip and almost reveal their illness. For example, a person may express exhaustion, which is due to the illness, but when asked why s/he is tired, the person may only state that s/he did not get enough sleep. Perhaps part of this person wished to share the truth, but another part felt afraid.

There is no wrong or right experience. These experiences are very personal and one's own to do whatever s/he wishes to do with them. However, something that is important to keep in mind is the use of meaning making. It certainly is not pleasant to have to physically and emotionally suffer due to illness and most people would want to wish it all away, but unfortunately there are things people cannot control. Fortunately there are also things people can control and that is what one chooses to do with the situation s/he is given. It can at times feel empowering to "pass" as someone without illness, but it can also be disempowering if the meaning of "passing" is that illness is something to be ashamed of and stigmatized.

Acceptance of one's illness and active coping have been found to be most helpful in living with chronic illness. This would include acknowledging what one's illness means with respects to one's quality of life, and actively seeking ways to have needs met, adjustments made and accommodations received. Requiring multiple health accommodations may lead one to feel not "normal"; however, is there a way to think of "normality" in a different way? Is there a way to integrate one's health needs into daily life, in a manner that is genuine with others and true to one self? Is there a way to make a more empowered meaning of one's illness? I think about the example with the teenager and the party. What could it be like for that teenager to feel ok with sharing with his/her friends that this is who s/he is and if they are real friends they won't pressure him/her into doing things that would be physically harmful? What an empowering position to accept one's limitations, ask for what is needed, and find a way to continue living in a balanced manner with less shame and judgment. Living with chronic illness does not need to mean a hiding of one's true self, one's needs, and one's limitations. Of course, realistically at times, there will be anxiety about people's judgments and assumptions, and of course this process of empowered meaning making is not an easy one; however, it is possible. This journey will take different forms for different people and will be experienced in a unique and personal way. It can be a great challenge, and some people may be able to embark on this process on their own, while others may need support.

As always, it is ok to seek help from loved ones, support groups, or psychotherapists. Good luck on your journey.