In September of 2016, the CSRF asked for your input on if and how Cushing’s impacted your relationships. Thank you to all who replied! The information we received was shared with a researcher in the area of quality of life and Cushing’s. Thanks to your responses, the degree of relationship problems associated with Cushing’s stimulated a research project which we will report on in a future newsletter! We received approximately 45 responses, some of which were heartbreaking. Since the survey included only text answers, we did not look at this quantitatively, however, there were a number of items that stood out. Below are some of the key points from each question we asked.
Did Cushing’s affect your relationship with your spouse or significant other? If so, please describe the effects and how you coped with this.
Only 4 respondents said that Cushing’s did not impact their relationship with their significant other. A small number of respondents reported that their relationships grew closer due to communication, understanding and support from the spouse or significant other. This included going to all appointments, becoming educated about Cushing’s together, understanding that behavior changes were due Cushing’s, not an individual’s choice and taking time away from a caregiving role.
Other relationships were severely impacted and a significant number of respondents indicated that their relationship or marriage did not survive their illness. Patients cited being short tempered, withdrawn, unable to engage in social activities, a lack of understanding on their partner’s behalf, being blamed for their illness, and partners couldn’t accept the life style changes associated with a serious illness. There were many mentions of sexual and intimacy problems associated with lack of a sex drive and body changes. There were also several reports of infidelity.
Did Cushing’s affect your relationship with your friends and family members other than addressed above? If so, please describe the effects and how you coped with this.
The vast majority of respondents indicated that relationships with family and friends were impacted. In some cases family was more supportive than friends and in other cases, vice versa. Even though relationships were often described as “strained”, many respondents thought their friends and family were very supportive and loyal. A large number of respondents spoke of withdrawing themselves for both physical and emotional reasons; energy, depression, anxiety, volatile moods, and embarrassment over their physical appearance. In other cases, family or friends withdrew. Many spoke of finding out who their true friends were.
Some found friends and family more supportive after being provided with written information describing the physical and emotional aspects of Cushing’s which enabled them to better understand. Some friends and family became part of the process of learning about Cushing’s. Some coping suggestions were therapy sessions, trying to stay involved in groups with regular meetings, being vulnerable and willing to talk with close others, meditation, some exercise, and making a conscious effort to see friends or family even if one didn’t feel like it and if only for a short while. Others made efforts think about their actions before reacting and to let friends determine how close they wanted to be, rather than pushing a situation and getting angry and disappointed.
Did Cushing’s affect your relationship with your children? If so, please describe the effects and how you coped.
In response to this question many mentioned that they did not have children due to sex life issues, the inability to get pregnant during their child bearing years and post treatment infertility issues. Of those that did have children, the only common threads were that respondents did not feel as if they were able to fully participate in their children’s lives and often described reacting poorly to situations leading to years of apologizing for their behavior. In some cases, forgiveness was granted and in others, the relationships continue to be impacted.
While Cushing’s can clearly negatively impact relationships, a number of respondents found it useful to share written materials about Cushing’s with partners, friends and family. This seemed to increase their understanding and led to greater supportiveness. If you find yourself in contact with those who don’t understand, you might find a recent newsletter/website article titled, Coping: How to Talk with Others about Cushing’s, helpful. If you would like to provide others with printed information on Cushing’s, please see Cushing’s Patient Pamphlets.
By Karen Campbell, Director and Newsletter Editor, Spring, 2017