The impact of a chronic illness, disease or diagnosis on caregivers is enormous emotionally, relationally, financially, logistically, sexually, and soulfully. There are many illnesses that impact a relationship each affecting the individual, couple, and family differently depending on many variables. Cancer, Parkinson’s, lupus, rheumatoid arthritis, Lyme, and heart disease are only a few of the major chronic illnesses that can deeply affect people and their loved ones.
Through my clinical practice I have worked with many couples dealing with chronic illness or a serious illness. For some couples, it draws them closer together emotionally, but they lose the opportunity for physical sexual connection. For others, their sexual connection remains intact and is a healthy outlet, but their grief may disconnect them emotionally. On the other end, there are other couples who feel a complete disconnection to all areas and survival is the only focus – one is fighting for their life and the other is fighting to keep their world afloat.
Assuming the caregiving role can impact your own health
Caregivers are often shouldering the emotional weight of their loved one, as well as their own. While one needs to focus on their treatment and health, they’re unable to support their caregiver emotionally to a great degree which leads to different and uneven burdens. For example, research has shown that “wives of patients with prostate cancer report greater psychological distress than their husbands” – the ones undergoing the treatment.
Although some caregivers report feeling positive emotions due to feeling needed, feeling valuable, and being a part of a supportive relationship, 29% of caregivers are diagnosed with depressive symptoms.
Assuming the caregiver role can also cause burnout. Caregiver burnout happens when you experience physical, mental, and emotional exhaustion from assuming the role. More than 60% of caregivers experience symptoms of burnout. Symptoms of caregiver burnout include sleep disruptions, weight changes, loss of interest in once loved activities, and an increase in common colds and other infections. For some, they no longer take care of their own health or skip basic health care appointments and deprioritize healthy daily practices. Conversely, some caregivers are motivated to take better care of their health because of what they are experiencing with their loved ones. Some become more medically savvy, proactive, and compliant.
How to stay connected to your partner through a chronic illness
You are having so many discussions and making so many decisions that you may feel ‘talked out’, but I encourage you to not avoid discussing your sexual, psychological, and physical relationship with your partner. Prioritize the topic and check in. What do we need? What do we have the physical and emotional capacity for right now? What do we miss about our relationship pre-diagnosis or symptoms? What support do you need to achieve your desires? What do we want? What are our options? What are the obstacles?
Choose your connection
There is no one way nor one kind of connection that is better than another. It is only what feels right for you both, right now, use your personal and collective agency to make decisions together. It may be that snuggling is the most intimate and fulfilling connection you want and can achieve. It may be that you want to seek products or medication that help aid penetration because you both long for that type of connection and pleasure.
Allow space for change
Things have changed. This will mean sexually too. It is okay to be sad or angry about this. Name the feelings and allow space for this to be acknowledged. Being upset with the change doesn’t mean you are upset with the person who is ill. There is an important difference that can get in the way of connection.
Seek professional help from a medical or mental health care provider who will look out for and support your sexual health as well. Becoming ill and caring for someone who is ill does not automatically or permanently remove the need for romantic or sexual connection in all forms. It changes it. Find professionals who are knowledgeable about sexual health, are sex-positive in their practice and with whom you will feel comfortable talking about your needs authentically.
Use them as an educational resource, too! Look for sex therapists, sex educators and sex coaches specifically. Read blogs like Femme Pharma’s that comprehensively support you and your understanding. Find trusted journalists who are in this space and give accurate and holistic information.
This is a great time to get creative and curious. Invite in new ways of thinking about pleasure. Explore all the senses you both have access to and discover what feels good to the both of you. Learn about new products to support comfort and pleasure, like Femme Pharma’s personal lubricant and moisturizer. Seek out new toys and aids for solo and coupled connection – there are so many vibrators, dildos, and sensual aids to choose from. Look for books and podcasts and online courses to open more possibilities for you. See if there are certain times of day where sexual connection seems more enjoyable for you and investigate different sexual positions that may give more comfort and pleasure to you both. Explore different sex acts that could bring you both connection and pleasure and include self-pleasure within your sexual connection and experience, too!
Know that you matter
It is not a betrayal to prioritize your needs and wants throughout this journey. In fact, taking care of you and letting others take care of you allows you to show up more for your loved one. Have fun, laugh, love, cry, and sleep. Make the moments matter and allow yourself to think of the future as well. Grieve, rage, and be exhausted. Give yourself the same level of compassion that you are giving your loved ones. You won’t get it all right – being a caregiver doesn’t mean you have to become a saint. It means you are rolling up your sleeves with someone you love and going into tough territory with them, which means you will be perfectly imperfect. Allow that statement to be a salve for when you’re questioning, doubtful, and when you feel terribly resentful, or frustrated. You matter and this is happening to you, too.
For women, the caregiver role may come naturally, you may not even notice just how much of you and your essence is slipping away in the face of the chronic illness. Continuing to give your time and energy, support, care, and love without replenishing will deplete you to the core. The role you’re playing is vital, and though you are in service likely most of the time, you too deserve and require support too. Oftentimes the place we lack support from most is ourselves. Holding onto, and prioritizing you and your needs is just as important as caring for the one you hold so dear, and it will make your caregiving skills that much more meaningful in the end to your partner, too.
Finding support and solutions, like some of the ones mentioned above, will greatly increase your health and wellness, sexually and otherwise. My view of sexuality is holistic, meaning that all aspects of your body, mind, and soul come together to make up who you are, how you interact with the world, and how you form and maintain relationships with yourself, your partner, and others. Knowing that, it’s impossible that any one experience or diagnosis occurs without affecting the rest of your being. Taking the time, seeking the support, and holding onto a clear sense of self throughout your life, diagnosis or not, will bring about health, contentedness, confidence, and resilience to be able to face whatever comes your way. You matter and this is happening to you, too.
Meet the Expert!
Dr. Juliana Hauser is a licensed couples and family therapist and licensed professional counselor. She is an expert when it comes to relationships, sex, and sexuality, and how they all holistically intertwine to make up the core of who we are. Dr. Juliana supports clients through her online private practice and exclusive courses, is a favorite of national media outlets, and is proud to consult with forward-thinking companies in the sex / sexuality sphere. Dr. Juliana serves as Content Counsel for FemmePharma, working to spread knowledge, information, and access to resources for those in the menopausal stages of their lives. If you’re seeking additional support through this stage in your life, or in any stage of life where sex, sexuality, and relationships intersect (hint: all of them), don’t hesitate to contact Dr. Juliana for a consultation.
FemmePharma has been helping women navigate menopause for over two decades. No matter where you are in your journey, you deserve to have knowledgeable, intimate healthcare partners to help you feel your best. Explore our other articles, podcast episodes with women’s health experts, and products to ease your transition into menopause.