The Neuromuscular Disease Foundation: Need to Raise Public Awareness
Why are patients so reluctant on discussing their disease?
In the Iranian Jewish Community, disability or mental illness is a taboo subject. The lack of support from the community causes patients to feel the need to keep their illnesses or disabilities a secret. This is why HIBM sufferers fear to talk about it or raise awareness. Status is very crucial in an Iranian community, and patients avoid discussing it publicly in order to maintain their family status. During the interview, Carolyn Becher mentioned, “there is an issue of marriageability and wanting to be able to present a clean bloodline to the outside world.” Illness affects the community’s perception of the individual’s social prestige. To further explain why patients choose not to disclose their illnesses to the public, Carolyn Becher stated that when it comes to “anything that [people] perceive to be unfortunate, whether it be conceive a child on their own, or being a carrier for a disease, it is something that they are not willing to talk about because they feel like it reflects poorly on themselves and their family and somehow they had some hand in it.” Unfortunately, patients may blame themselves at times. They are under the illusion that they have failed in some way and that their illness or disability is a form of divine punishment.
Why is it important to have conversations about this disease?
Carolyn Becher explains the importance of the word of mouth.
How does HIBM affect loved ones? When someone is getting married, is it fair to keep this information from his or her future spouse?
Having HIBM is very personal and emotional for the patient. Hence, it is ultimately up to the patients themselves to decide whether or not they want to notify others that they are a carrier. Carolyn Becher believes it is always a better choice to share this information with loved ones. Not only is it more respectful to one’s spouse, but being open about this disease can also prevent the spread of the disease. However, even though it is usually better for both the patient and their family to be open about the disease, not all patients choose to do so.
In the Iranian Jewish Community, disability or mental illness is a taboo subject. The lack of support from the community causes patients to feel the need to keep their illnesses or disabilities a secret. This is why HIBM sufferers fear to talk about it or raise awareness. Status is very crucial in an Iranian community, and patients avoid discussing it publicly in order to maintain their family status. During the interview, Carolyn Becher mentioned, “there is an issue of marriageability and wanting to be able to present a clean bloodline to the outside world.” Illness affects the community’s perception of the individual’s social prestige. To further explain why patients choose not to disclose their illnesses to the public, Carolyn Becher stated that when it comes to “anything that [people] perceive to be unfortunate, whether it be conceive a child on their own, or being a carrier for a disease, it is something that they are not willing to talk about because they feel like it reflects poorly on themselves and their family and somehow they had some hand in it.” Unfortunately, patients may blame themselves at times. They are under the illusion that they have failed in some way and that their illness or disability is a form of divine punishment.
Why is it important to have conversations about this disease?
Carolyn Becher explains the importance of the word of mouth.
How does HIBM affect loved ones? When someone is getting married, is it fair to keep this information from his or her future spouse?
Having HIBM is very personal and emotional for the patient. Hence, it is ultimately up to the patients themselves to decide whether or not they want to notify others that they are a carrier. Carolyn Becher believes it is always a better choice to share this information with loved ones. Not only is it more respectful to one’s spouse, but being open about this disease can also prevent the spread of the disease. However, even though it is usually better for both the patient and their family to be open about the disease, not all patients choose to do so.
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