Interview by Chay Tanchanco, LMFT
When enduring chronic illness, physical symptoms can overwhelm us; mental health can often become a side effect rather than being brought to the forefront. For both those suffering with the illness and the caregivers, chronic illness can feel like a bottomless pit.
Rachel Koonse, LMFT is a therapist at Foresight with experience working in school settings, county jails, and within nonprofits with individuals, couples, and families. She is passionate about mental health and grief work, especially in light of chronic illness.
Chay: What first drew you to chronic illness?
Illness is a universal human experience. We all encounter health struggles, both big and small, throughout our lives. And yet, illness, aging, and mortality are often taboo subjects in our corner of the world. I was initially drawn to work in this arena because of personal experiences with chronic and terminal illnesses in my circle of family and friends. My passion for the work has been sustained by a deep desire to normalize discussion around universal human experiences of health fluctuations, aging, caregiving, and grief and loss.
Chay: It can be overwhelming for those already going to many medical appointments and juggling many different providers, not to mention experiencing the pain or discomfort of physical symptoms. What is the unique benefit of coming to see a mental health specialist?
Supportive therapy when managing chronic and terminal illnesses can be an outlet in so many regards. Therapy can offer space to address the breadth of your emotional experiences associated with your health, navigate difficult logistical decisions surrounding your care, generate meaning from difficult circumstances, facilitate communication with loved ones, link you to adjunct support resources, and work through relational changes that can occur throughout your health journey. Therapy can also offer an environment where complete honesty and vulnerability is held with compassion and non-judgment. When physical health is compromised, it can prompt meaningful existential questions, and these questions can be explored and refined within therapy.
Chay: What is something people may not realize about this issue that you have learned?
Language is so important to be mindful of when addressing someone who is managing health difficulties, facing death, or experiencing grief and loss. There are so many sayings in our vernacular that are well-intended but can do so much more harm than good. For example, we often regard the “fighter” mentality as a symbol of encouragement for those living with illness.
But what if someone opts to discontinue treatment because it is deterring from their quality of life? Are they not “fighting” hard enough? Or what if someone dies as a result of illness? Did they “lose the battle” upon their death? Sayings like that can imply that we have the ability to control our own mortality simply through remaining “strong” or “fighting.” However, it is also important to be aware that supportive language for one person may be contraindicated (aka unhelpful or inappropriate) for another. It is crucial to mirror the language of the person facing illness as the words we use can color the way in which our well-intended support is received.
Chay: How would someone with chronic illness or their caregiver look for the most appropriate care for them?
I think a great starting point is taking inventory of the support resources available at your treating hospital or medical center. Link up with a nurse navigator or social worker and explore resource centers at your medical facility. These starting points will provide support in and of themselves, but will also serve as a knowledge hub and facilitate connections to other support resources.
Further, there are several national organizations that have local chapters (e.g. American Cancer Society) to research and connect with. There is also immense support and information that can be found in linking with others who share aspects of your health experience. Most importantly, acknowledging the need for support can be a difficult yet humbling first step. So often, caregivers feel as though they must remain the “strong one,” and seeking support somehow implies selfishness, weakness of moral character, or inability to provide adequate care for their loved one.
However, no matter how overstated this may be, providing care begins with caring for yourself, and it is actually a great act of courage and vulnerability.
Special thank you to Rachel for taking the time to answer these questions, it's good to know more about how chronic illness affects each of us, whether we have the illness or we are caring for someone who does.