Living With Polio

PPS as Main Focus of Relationship

Post-Polio Health, Volume 26, Number 2, Spring 2010.

Dr. Stephanie T. Machell is a psychologist in independent practice in the Greater Boston area and consultant to the International Rehabilitation Center for Polio, Spaulding-Framingham Outpatient Center, Framingham, Massachusetts. Her father is a polio survivor.

QUESTION: Although all couples face challenges and adjustments due to age and health, how can people diagnosed with post-polio syndrome (PPS) make sure that the “health” issues don’t become the main focus in the relationship?

Response from Stephanie T. Machell, PsyD:
Communication is key for keeping any relationship in balance. Even though it may seem counterintuitive, talking about health issues is the best way of keeping them in perspective and finding solutions that work for the couple.

Polio survivors’ independence is one of their greatest strengths. However, this independence can make it difficult to discuss physical changes, especially those that might mean that assistance is needed. All too often, what isn’t discussed takes up far more space in the relationship than what is, and health issues can easily become the “elephant in the room.” Needs that are clearly expressed can be met. Unspoken – and thus unmet – expectations create resentment that can erode the relationship.

This is especially important when issues of mobility or energy and fatigue create the need for the person with PPS to accept help from their temporarily able-bodied (TAB) partner. If this assistance involves personal care, it can affect the romance in the relationship. If the couple is aware of this and other issues that might come up, they can work together to consider whether it would be better to hire outside help, such as a personal care attendant or “bath person,” or if there are ways to use this as an opportunity to deepen their intimacy.

When the TAB partner has to take over tasks that were previously the responsibility of the partner with PPS, the balance of the relationship shifts, and resentments can arise in either or both partners. A reexamination of tasks may be needed. Are there tasks that the polio survivor could take over that require less energy and/or mobility to complete? If possible, it may be helpful to look for outside assistance, such as hiring a housecleaner or landscaper. Taking a fresh look at tasks could turn into a positive experience, with each partner finding new interests and strengths.

The biggest concern I hear from those with PPS in terms of their relationships is how energy issues affect activities with their partners. They worry that they are holding their partner back, even when the partner protests that this is not the case. It is helpful to find ways that the person with PPS can either continue to participate in valued activities (perhaps by giving up an activity that is less essential or valued) or to find new activities that both can enjoy together while encouraging the TAB partner to continue to pursue more strenuous activities with others.

Another concern that often comes up is the fear of being or becoming a burden to those around them. Again, communication is key in addressing this, but in my experience all too many polio survivors suffer in silence with these and other fears. Simply talking with the TAB partner about this will often reduce this fear. It is a good idea for this to be an ongoing conversation, as these fears tend to recur with real or perceived changes in the polio survivor’s functioning, as well as when the TAB partner takes on any new responsibilities.

If the couple is having difficulty communicating about health concerns, or if it seems that health concerns have already taken over the marriage and neither party can see a way to change this, it may be helpful to see a couples counselor. An objective third party can help sort out concerns and provide the freedom to bring up difficult subjects.

Finally, I strongly believe that humor, including black or gallows humor, can help in most situations. Couples that can laugh together can get through almost anything.

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