National LGBT Cancer Network Families of Choice; Sources of Support for LGBT Cancer Survivors
All research confirms the importance of support during cancer treatment. In fact, social support does more than make the patient or survivor feel good; it has been linked to greater quality of life and even increased survival. We turn to our support team for information, emotional support, advocacy and physical and financial assistance. So, who are the members of lesbian, gay, bisexual and transgender (LGBT) support teams?
My organization, the National LGBT Cancer Network, asked this question of over 300 LGBT cancer survivors in a recent national survey. The results surprised us. Compared to their heterosexual counterparts, LGBT people had some striking differences in who they turned to for support following a cancer diagnosis. Most of the discrepancy can be explained by how we identify “family”. For many LGBT people, our most important relationships exist outside of the legal definitions.
Let’s start with our spouses/significant others/life partners/lovers. Only 9 states and the District of Columbia have legalized same-sex marriage thus far, leaving most LGBT couples without a legal attachment to each other and without many rights assumed by heterosexual married couples. Yet, just as we see in the general population, partners, if we have them, are the most important members of our support teams.
Gay men are less likely than lesbians to have children, but in many LGBT families, only one parent may have a legal tie to the children. The other parent often resides in a legal void with no rights or recognition. Traditional intake forms that assume the heterosexuality of the patient can miss these powerful relationships of both responsibility and support. Non-legal parents can be made invisible.
What about our parents and siblings? Most studies of cancer survivors list family as the second most important source of emotional support. However, it is not uncommon for LGBT people to have been rejected by their biological families because of their sexual orientation and/or gender identity. The severed relationships are also not necessarily healed when the LGBT person is diagnosed with cancer. On the contrary, the pain of the disconnection is often felt more acutely. In our study, less than half of the survivors listed their parents on their support team. As one survivor wrote,
“Since my biological family refuses to have any contact with me it is essential to my health and survival that the doctors understand that my partner IS MY FAMILY and when they treat him as such my outcomes are much better.”
“It would have been nice to have my partner with me because she understands lots of medical things and I have no clue about medicine at all. My family refused to come and told me they hoped I would die from the cancer.”
In response, LGBT people often create an invisible circle of caring, committed friends and partners, often referred to as a “family of choice”. Over three quarters of our study respondents listed friends as part of their support team. Those without long-term partners relied nearly exclusively on this group for emotional support and physical care outside of the treatment facilities, yet typical intake forms also miss this powerful source of support. One person in our study offered the following suggestion to health care providers,
“I would like to talk about taking friend relationships as seriously as partner relationships in terms of a support system.”
Our study also captured a group not usually addressed as support: ex-lovers, who were listed by 16% of the LGBT survivors as part of their support team. I have found no research confirming a similar category in the general public. This relationship may be hidden, but it can be of critical importance to some survivors. As one study participant stated,
“My lover at the time and my ex bonded together to support me for over two years. My friends and community and doctors wrapped themselves around me.”
Understanding a cancer survivor’s support system is relevant to all aspects of cancer care, from the consultation room to discharge planning to end of life discussions. We must work to remove all barriers to support for LGBT survivors. Based on our study, we suggest three activities that would make a difference:
1. Ask all survivors about their support systems and make sure forms allow for relationships that are not legally recognized.
2. Be vocal about welcoming all the people listed into treatment and aftercare.
3. Do not assume that LGBT people have their biological families to lean on, as many may not.
Click HERE to download Coming Out with Cancer: Living After Cancer Treatment, a brochure for LGBT folks
(Reposted from The LIVESTRONG blog)