We have long accepted the premise that it takes a village to raise a child. There is a need to adopt the same type of thinking when caring for ourselves and loved ones as we age. With aging typically comes an increase in the frequency of interactions with the healthcare system. That system is extremely fragmented, and understanding the options and decisions that will be required as we age is daunting for everyone. This is compounded for LGBTQ folks. The homophobia and biases experienced throughout our lives have created circumstances that are particularly challenging as we age.
For some, there may have been few interactions with the healthcare system due to fear of being outed or the reaction of providers. A transgender person is at particular risk of being ostracized due to their transition status, living as their expressed gender and the lack of training of healthcare professionals. That lack of interaction can result in higher incidences of advanced stage cancers and complications from living with untreated chronic diseases.
Risk-taking behaviors and addiction, so common in our community, have been hard on body systems. The consequence is an older population with a high rate of obesity, heart disease, depression and other chronic conditions.
Social isolation and loneliness in the aging population is a common issue and is particularly problematic in the queer community where so many are estranged from biological family or may be fearful of being out with work colleagues and neighbors.
Lack of protections and general education to address the specific issues of homophobia and LGBTQ bias in the long-term care and housing industry is of great concern for the safety, as well as physical and mental well-being, of our population.
So what now?
As grim as this may sound, we live in a time where there is more awareness than ever about who LGBTQ people are. We can marry. For some areas of the country, the legal path to adoption for same-sex couples has become easier. The AIDS epidemic of the 1980s and 1990s stretched the roles we hold in our lives as friends, care givers and advocates. Much of what we learned from that tragedy can serve us as we age. More of us than ever are out in our families, jobs, government, neighborhoods, houses of worship, friendships, schools, healthcare systems…the list goes on and on.
Two critical steps in creating our future support network, are our investment in our personal education and advocacy skills and planning. Here are a few things you can do to get started.
1. Understand some basics about the healthcare system:
• Healthcare is a business. Just like every other industry, there are people within it with a wide range of skill sets, specialties, and competencies.
• The doctor may not always be right. Don’t blindly take recommendations. Ask questions about the benefit of and consequences of not doing something. Inquire about the frequency and volume of the particular treatment or procedure your physician is recommending and what their respective outcomes may be. A competent physician will not be put off by this line of questioning.
• Do not assume that all members of the healthcare team work in a collaborative fashion and have a grasp on your treatment. With a highly specialized industry, it is not uncommon to routinely have multiple physicians involved in your care. Motivations and constraints for any given person at any particular time are varied.
• It is essential that you become an engaged participant in your health in order to drive decisions that are best for you. Always get questions answered to your satisfaction. Always get second opinions from independent providers on complex or high cost medications and procedures.
• Remember that your healthcare provider works for you. There are many good, compassionate providers of healthcare and aging services. If you are not comfortable or satisfied with who you have, find someone else.
• Remember, the worst time to make any decision is during a crisis as you will have limited time to understand options and make crucial decisions. Planning and education are essential.
2. As you plan and build your support system:
• This is a process. It will take time to develop trusting relationships with your care and service providers and determine what is right for you.
• Be open with your providers. If they have a bias about you it is important to know that early and move on.
• Ask your friends and others you trust for referrals and to share their experiences with various providers and services.
• Look for healthcare and service providers who want to collaborate with you. Collaboration is key to good outcomes and your overall satisfaction.
• Create a network of trusted loved ones and advocates. Start discussions about what is important to you and what defines quality of life to you. Keep your network informed of changes in your health and ask them to accompany you to appointments for serious conditions.
3. Become familiar and active with organizations that support the LGBTQ community:
• There are organizations that advocate for the LGBTQ community such as SAGE (Advocacy and Services for Gay, Lesbian, Bisexual, Transgender Elders), Lambda Legal, GLMA (Health Professionals Advancing LGBT Equality), TAN (Transgender Aging Network) and the HRC (Human Rights Campaign) to name a few.
• LGBTQ organizations are partnering with organizations that support our growing aging population like the AARP, the American Medical Association and Justice in Aging.
There are many resources available to assist in the education and planning process for the next phase of life. We can tap into those resources to support ourselves, friends and families. The better planning we do, the more prepared we will be to face the next phase of our lives.