I have a sister with a rare medical condition. Hardly anyone knows about it and I found out by mistake. I have watched her surmount her many challenges, but I am stuck pitying her (and myself) and wishing things were different. She’s such a good person so why her?! I have not moved past it and it pains me deeply watching her...
I’m helpless and powerless in terms of helping and I wish there was something I can do
Any recommendations or advice? Thank you.
I’m truly sorry to hear about your sister’s illness. It is always difficult for us to deal emotionally with the illness of a loved one. When the illness is rare, it can be all the more difficult. This is partially due to the fact that there is typically less emotional support available for conditions that are not well known. You, in particular, are in the isolated position of having found out about your sister’s illness, apparently without the ability to discuss it. I wonder whether your sister knows that you’re aware of her condition, and whether you’re able to discuss it with her. If not—and you believe that this is a possibility—doing so can give some relief to the both of you.
In addition to a possible lack of support, rare illnesses may have less research associated with them. Prognosis and treatment may be less clear, leading to uncertainty. When we are faced with a challenge, anxiety and associated feelings can be significantly exacerbated by lack of clarity and uncertainty. FDR, in his first inaugural address, famously stated that “the only thing we have to fear is fear itself.” Of course, depending on the source and type of anxiety it can be more complicated than this quote seems to indicate, but the general concept persists.
It is normal to feel afraid when faced with a potentially life threatening situation. However, anxiety of almost any sort is usually artificially increased by lack of information and understanding. In highly stressful situations, many of us employ defense mechanisms to help us deal with our emotions. Two commonly used defense mechanisms are repression and denial. These allow us to ignore problems by preventing us from acknowledging the details. Though this automatic response may work to some extent in the short term, it can cause added distress over time.
You mention your feelings of pity toward your sister. I don’t know whether you speak with your sister about her illness, but most people don’t like being pitied. Though you may not be able to control your emotions, you can control the way in which you express them. In the psychological vernacular, sympathy is seen as pity without being truly emotionally engaged with the other person, while empathy is viewed as feeling what you think the other person feels by placing yourself in their shoes. If you do discuss your sister’s illness with her, it’s likely that she would appreciate the sense that your feelings come from an ability to see things from her perspective. If you cannot actually achieve this, perhaps you can at least show her that you want to do so. This may help her to some degree. It also may open her up to sharing her feelings, in turn leading to your increased ability to truly see things from her perspective.
Yehuda Lieberman, LCSW
psychotherapist in private practice
Brooklyn, NY | Far Rockaway, NY
author of Self-Esteem: A Primer
www.ylcsw.com / 718-258-5317